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Long Haul COVID, Central Sensitization, Mind-Body Syndrome and The Never-Ending Search for Answers

Disclaimer

This website/article is not a substitute for professional medical advice, diagnosis, or treatment. The information provided here is for informational purposes only and should not be used to diagnose or treat any health problems. The story below is my own personal story. I am sharing my story in hopes that others going through similar struggles might be able to find answers, solutions or treatment without having to go through all of the steps that I did. I am not incentivized or paid for sharing this story. 

This website/article discusses instances of suicide. If you or someone you know is struggling with thoughts of suicide or self-harm, please seek help immediately. If you are in the United States, you can contact the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255) for confidential support and assistance. If you are outside of the United States, please refer to your local mental health resources for support. Remember, you are not alone. Help is available.

 

Read The PDF Below, or Continue To The Article
Chapter 1: How It Began

Diagnosis: Central Sensitization, Complex Regional Pain Syndrome, Hypersensitivity, Functional Neurological Disorder, Neural Network Pain, Chronic Pain, Peripheral Neuropathy, Paresthesia, Mind-Body Syndrome, Neural Circuit Dizziness, Vestibular Migraine, Persistent Postural Perceptual Dizziness, Mal De Débarquement Syndrome, Vertigo, Tinnitus, Occipital Neuralgia, Chronic Fatigue Syndrome, Idiopathic Chronic Nausea, Anxiety, Depression, Long Covid, Neuro Immune Condition Syndrome (NICS).

The above are just a few of the diagnosis that I received from doctors over the course of 2023 and 2024.

As far as I know, it all started in 2020 when I first caught covid. I had warning signs that something terrible might be coming when I experienced severe dizzy spells around February of 2021. Although they worried me, I would just simply change my eating & drinking habits and shrug them off. Little did I know what was in store.

As a nightclub and restaurant owner, I was around a lot of people quite frequently. With that being said, it was easy for me to catch and test positive for covid almost as soon as it made its way over to the United States back in 2020. Over the course of the next couple of years, I tested positive for covid a total of 4 times. The first couple of times that I got covid, it wasn’t unbearable. It felt as if I had a pretty severe cold, just as most people would report. There were a couple of days that I had difficulty getting out of bed to use the restroom due to severe shortness of breath, but it passed fairly quickly (within a few days). Within a couple of weeks, like most I was back on my feet and living life happily again.

Throughout 2022 however, I couldn’t seem to get rid of a terrible chest congestion that ended up lasting 6 months… it felt as if it would never go away. During that time, I quit smoking. Miraculously, I got better around November of 2022, just in time to celebrate the holidays with friends and family.

I was extremely excited to be healthy again and decided to make some pretty intense health changes. In addition to quitting smoking, I went on a strict keto diet and lost 20 lbs, I was working out 6 days a week and I lessened my drinking. When I get something in my head, I tend to do it to the extreme. When I quit smoking … I quit cold turkey. When I went on Keto, I really changed the way I ate. Looking back, I may have made some pretty drastic changes far too quickly. I wondered if I was changing the chemical make-up of my body. Once the chest congestion started to go away, I had about a month of relief before an odd depression started to take over me. It really made no sense to me at the time. Besides some pretty crazy work stresses, I didn’t think that I had anything to be super depressed over. But there it was, so I had to do something to deal with it. Although talk therapy had never worked for me in the past, it was severe enough that I decided to reach out to a therapist to see if we could get to the root of the problem. I was in for no surprises from the therapist … learn to breath, be mindful, process your stress, balance your work and personal life etc. It was the same old stuff that I had learned in my childhood and had been practicing to the best of my ability. If you have never heard any of this before, I’m sure it could be helpful. But again… talk therapy has never worked for me. It’s very likely that I’m just too stubborn. 

Although I talked to the therapist about my Covid history, it never crossed either of our minds at the time that the new depression that I was experiencing could be a result of Covid. It wasn’t until much later that my research would lead me to discover that Covid causes inflammation in the brain which releases cytokines (proteins that are secreted from certain cells in the immune system) that are known to cause fatigue, low energy, and low motivation ― symptoms which are also associated with depression and anxiety.

At the time, I was under an immense amount of pressure as I was gearing up to start construction on a massive $7.412M project. I had been working tirelessly for the past 5 years with architects, contractors, and the city of Jacksonville to build out and introduce several new entertainment venues. I was working with some pretty high-profile figures along with the Downtown Investment Authority (DIA). They were relying on me to build out some of my properties on Bay Street and to make Jacksonville’s Entertainment District something the city could be proud of. There was a lot on my shoulders, but I was up for the challenge. Construction was set to begin in January 2023. 

See: JaxDailyRecord.com

It didn’t help that everything at the time seemed to be going terribly wrong at work and in my personal life. If it could go wrong … it did.

I was getting audited by the IRS. I had a lady with the city fighting our request for an address change for no reason other than to be a pain in the butt. I was getting new floors and a new kitchen installed at my house, and the contractor was really screwing everything up. I had a new employee by the name of Rebecca Morgan who faked a slip and fall and was trying to sue for workers comp. I had another girl by the name of Ashley B who was attacking our business online with multiple one star reviews across all platforms, because someone at one of our events asked our security to have her keep her distance from them at the club (now I know why). And yeah, I’m calling them out by name. It’s very likely that the stresses I was suffering from at the time had something to do with my immune system taking a hit, and me getting sick… and those girls really are the definition of evil. Ha! In short, work was a nightmare. The items I just listed were just the tip of the iceberg. I was putting out what felt like 50 fires a day and it was a bit overwhelming. I recall saying to myself … “how can one person deal with this much!” Looking back, I am sure that my declining mental state from the virus played a big role in how I was dealing with everything.

I knew it was time for me to take a break, and my therapist agreed. He gave me some homework and said “Jon, you need to schedule a vacation. The next time we meet, I want you to have a plan that you can present to me for a trip that you are going to take”. I hadn’t been on a vacation for quite a while. At the time, my partner and manager, Blake and I were in the process of planning out a festival that we were going to throw. I thought it would be nice to take a trip to Tampa to enjoy a festival thrown by another promoter called Blended, that had a similar theme to what we were aiming to produce. We could go and enjoy this festival while taking some mental notes, I thought. I booked several VIP tickets for him and I, his girlfriend, my girlfriend and a few other friends. We booked hotel rooms and were excited to get away. As the event date neared, we started hearing rumors that the event may not happen. Sure enough, the festivals owners were pulling out of the event, the event was going to be cancelled, and no one would get refunds. It was a huge deal in our industry… and just another thing that if it could go wrong … it did.

Moving into January of 2023 (still without a vacation), the staff and I had just pulled off another hugely successful New Year’s Eve bash at Myth Nightclub. As operator’s we don’t celebrate on NYE, but instead… we run the show. My friends, manager and a good amount of the staff decided to go out on or around January 4th to celebrate the New Year. We had a great time, had some drinks, and called it a night. Little did I know, this would be the last time that I would enjoy anything for years to come. The next day, I woke up extremely dizzy, nauseous, and terribly sick. It was like no hangover I had ever experienced before. I tried to shrug it off and tell myself that it’ll be better the next day after a little rest. And so began the worst days of my entire life.  

The next day, the nausea, dizziness, and sickening feeling worsened. I also had a pressure on the left side of my head that felt as if someone was pushing on my head from the left to the right. It was constant and unbearable, but I was sure that it would pass. I decided to fight through it, telling myself that I needed to get moving. I went up to the gym at my house and started doing some light cardio on the stepper machine. Suddenly, the entire right side of my body went numb, a loud buzzing started in my ears, I felt pins and needles throughout my legs, arms, chest, body, and I collapsed. I thought to myself … it was the right side of my body, so a stroke didn’t make sense. Internally, I tried to downplay it telling myself that it wasn’t serious enough for an ambulance. So instead, I called my parents. My dad thought it was a panic attack and brought over a Xanax. I’ve always feared drugs like this, so I took half, which calmed me down just enough to get by. However, the symptoms persisted leading me to believe that it was not a panic attack.

Over the course of the next few weeks, I dealt with a constant pressure in my head, nausea, dizziness, vertigo, balance problems, deafening tinnitus, severe anxiety, a feeling of fullness in my ears, numbness in my arms, hands, legs and feet, and at times I had this really weird feeling that my entire body was vibrating. I also had these weird sensations like I had ice packs on my kneecaps and elbows. The one thing that was nice, was that I was sleeping like a baby at the time … that would soon change.

I started out by going to my primary care doctor. At the time, I was on 2 medications. Atenolol for my blood pressure and Lexapro for anxiety and depression. I had been on Lexapro for so long that I actually didn’t even remember why I was taking it. Anxiety and depression weren’t even part of my vocabulary … likely BECAUSE of Lexapro. The doctor recommended that I try increasing my Lexapro dose to 10mg, as I had only been taking 5mg for the past 20 years, and supposedly the therapeutic dose starts at 10 mg. I tried doing as instructed … bad idea. When I took the additional dose, I felt as if I was going to have a seizure. My pupils dilated, I got extremely cold, nauseas, completely numb, screaming tinnitus in my ears, and my anxiety heighted. I laid in bed, shaking for about 6 hours and waited for it to pass. I would later find out that this is called Serotonin Syndrome, which is kind of like overdosing on serotonin. It was almost as if I was having an extreme sensitivity to any medication that I took.

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