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Chapter 3: The Loop

As a child I suffered from occasional seizures. However, as I grew up, the frequency of the seizures lessened. I still had them here and there, particularly in medical situations like when at the dentists or at the doctors. When I would get a shot, my blood drawn, or an injection I would tend to pass out, which would lead to seizures. Some would call this “convulsive syncope” but most of the doctors that saw it happen said that it was a full-blown seizure. Some would say that it would be brought on by anxiety, which made sense. It’s weird though, because I don’t fear needles, I fear the reaction that my body will have when someone else pierces me. Because of this, I did everything within my power to take as many of the blood tests that I could by ordering them online. I would order CBC (complete blood counts), Mineral Tests, Celiac Disease tests, Heavy Metals tests, cortisol tests, diabetes tests, hormone tests, liver panels, STD tests, vitamin tests, you name it … all online. And afterwards, I would post the test results to a site that I created for the doctors to review.

For the most part, even though I was feeling absolutely horrific, everything was coming back normal, with a few exceptions. My cortisol was high and my testosterone was low, which led me to this research:

I would research for hours, lining up telehealth calls and watching video testimonials from long covid survivors. One “masculine male” long covid survivor described his testosterone levels like that of a 11-year-old girl. The owner of an online brain retraining course that I would eventually take called re-origin.com described his testosterone levels the same way. The telehealth doctors recommended that I line up an appointment with an endocrinologist. So, that’s exactly what I did. After waiting a couple of months to be seen (something that I would soon encounter over and over again), I shared my results with the physician, but like all of the other doctors she shrugged it off as not much to worry about. “But I felt terrible”, I told her. She didn’t have any advice for me. I asked myself … if all of my blood tests are coming back normal, except for testosterone and cortisol, what can I do about that? I decided to line up an appointment with a Low T doc. She explained that I would need to start taking testosterone shots once a week, and she ordered the medicine. I thought “hey, maybe this will help me get used to needles a bit more”, always trying to find the silver lining in every situation. So, I took my first shot. The next day, I had some relief from my depression, but I was still not well. However, It was enough for me to get out of the house and go to a dinner with my parents and 2 of their friends for the first time in ages, which was nice. I had hoped that this would be a trend and that I would continue to get better. Unfortunately, around day 3 of taking the medicine, I started to notice that my anxiety was getting more and more severe. It would eventually get to a point where I thought I was going to need to be committed to a psych ward. It felt as if my mind was going a thousand miles an hour, but my body just wanted to lay down. My gut felt as if it were being wrung out like a wet towel, and the nausea was just unbearable. I felt as if I was going to throw up every second of the day. I would spend hours daily dry heaving, all the while dealing with an indescribable pressure in my head, a feeling of electric shocks in my brain and an anxiety that made you feel as if you were seconds away from death.

By this point, I was no longer able to go into work. Which for me, was the worst thing imaginable. I literally went from working 16 hours a day, working out 6 days a week, having dozens of projects in the pipeline, being very active socially, and loving the grind, to being totally incapacitated and dealing with health issues from the moment I woke up, till the moment I tried to go to sleep. It was pure agony. There was no longer any joy in my life… and then… like a ton of bricks, it hit me… There’s no way out. It feels so permanent. I am not going to get better. There’s only one thing left to do… I going to have to kill myself.

NOTE: If you are experiencing thoughts like this, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255)

“How did this happen?”, I thought to myself, again. I worked so incredibly hard to build this amazing life, and overnight – it was ripped away from me. I had it all… I owned a restaurant, a nightclub, commercial properties, and marketing companies. I had a great income, enough savings to retire at the age of 44 (if I wanted). I had a great social life, people that cared for me, and an amazing staff that worked so hard to make my businesses and dreams successful. And now, none of it mattered. I was in so much pain, and I was suffering so terribly that I had come up with a plan to kill myself. In fact, I had gone as far enough to attempt it on several occasions, which I am not proud of. The only thing that stopped me was the thought of what my actions might do to my family and friends. It would be selfish of me to make my family go through that experience. That, and the extremely worrisome concern that I might attempt it and fail, leaving myself terribly maimed, and further disabled for life. The ONLY thing that kept me alive was the ever-fading fantasy that there might eventually be an end to my indescribable suffering. I can remember pleading with the universe… “PLEASE, take my arm, a leg … anything but this. Just let the dizziness and nausea stop. I’ll deal with the pain, but please, please, please I am begging you… just give me some type of normalcy so that I can function again!”. “I’ll be a better person. I’ll take more family trips; I’ll be sure to focus more on the important things in life and watch my stress levels. Whatever it takes… PLEASE”, I begged. No one listened.

No doctor was able to diagnose me. I had no clue what was happening to me so I clung on to the hopes that this was long-covid and that I would soon get better, as most of the research described. I had read that one of the major side effects of long-covid was anxiety and depression. Over the course of the next few months, I would discover several online national psychiatry networks like Cerebral.com, PlushCare.com, and Brightside.com. After telling the online psychiatrists my story, they were pretty much willing to prescribe me with anything to see if it could produce results. 

Although I was experiencing extreme medication sensitivities, I tried just about every antidepressant on the market: Gabapentin, Lyrica, Amitriptyline, Zoloft, Effexor, Buspirone, Bupropion, Mirtazapine (Remeron), Pristiq, Cymbalta and dozens more. I remember gabapentin giving me this feeling as if I was outside of my body. I believe others call this disassociation. ALL of the drugs caused severe pain throughout my entire body, with the feeling of razor blades slicing through me. The worst was the feeling that my ears were being sliced off. At the same time, I would be suffering with tinnitus (ringing in the ears) so loudly that it sounded as if my brain was being cooked and I could hear the sizzle from my brain being fried, as close as my brain is to my ears. The pain and torture that I went through is indescribable.

One of the online psychiatrists recommended that I go in for an evaluation locally. Although very difficult for me to do so (because of my incapacitation), I scheduled an appointment with a local psychiatrist who prescribed me Clonazepam. I was actually kind of mad at him for doing so. I didn’t want to be on a dangerous Benzodiazepine drug like that, and after all the suffering that the SSRI’s were putting me through, I didn’t have faith that it would work anyway. One night however, my anxiety got so bad that I decided to try it. Oddly enough… it worked! It slightly calmed me down, just enough to make it through the night and it didn’t cause any pain. Wow! I thought. It had been so long since I was able to somewhat relax. I can remember watching a movie with my girlfriend on this night. It was the first break I had gotten in months. However, I knew the risk of abuse when it came to Benzo’s, so I was incredibly careful with this drug. I would only take a ¼ of a 0.5 mg pill once every 3 days or so. I didn’t want to get hooked. With my anxiety as high as it was, I wasn’t taking any chances.

It got me thinking … why would this drug work and not cause pain, where the other ones would? I would eventually conclude that anything that altered serotonin levels was what was causing pain, and this drug had a different mechanism of action, affecting GABA instead, which led me to this research:

I thought, maybe a virus somehow over sensitized my serotonin receptors? Sure enough … any time I would take any medication that altered serotonin… even Ibuprofen or an NSAID, I would get pain. I could only take drugs like Benzo’s or Hydroxyzine to help with anxiety since these drugs don’t alter serotonin. They never worked as well as Lexapro though, and many of them were much more dangerous. Although, coming off of Lexapro may have been one of the most dangerous experiences of my life.

I was on a mission to find an antidepressant that didn’t affect serotonin so that I could get functional again. Nothing worked. My body rejected everything. I even got to a point where I ordered Lexapro in liquid form so that I could take 0.1 mg at a time to see if I could slowly wean myself back up to my previous dose of 5 mg, but by the 3rd day of taking literally one drop of Lexapro, I was in excruciating pain again.  

Some of my research brought me to understand how Serotonin can cause pain

Chronic pain seems to cause serotonin to be released by the brain into the spinal cord. There, it acts on the trigeminal nerve at large, making TRPV1 hyperactive throughout its branches, even causing some non-pain-sensing nerve cells to start responding to pain. Hyperactive TRPV1 causes the nerves to fire more frequently, sending additional pain signals to the brain.”

While experimenting with random SSRI’s and other anti-anxiety drugs, I continued to take very small doses of Clonazepam to get me through the day. There wasn’t much that I could do in terms of functioning, but I did find that if I were to drive, or bike it would for some reason minimize my dizziness. That is … if I weren’t having a panic attack while stuck in traffic. Again … nothing really made sense.  I never had panic attacks while driving. I used to love driving. Now, I was scared to death of being stuck between cars in traffic with no way out. What?! Just typing this now makes me wonder what was going on in my head. And why would driving or biking make me less dizzy? I remembered answering intake forms at doctors’ offices where they would ask if my dizziness got worse at the grocery store when going down isles… mine was the opposite. I seemed to be more balanced there and while driving or biking than any other time.

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