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Chapter 2: Reaction

There were times that I was extremely fatigued and nearly passed out when standing up. I thought that maybe my blood pressure was evening out from me quitting smoking a year ago and that I no longer needed Atenolol (my blood pressure medication). Later, I would find out through the Apple Health app that my pulse was consistently dropping over the course of a year from an average of 70 BPM to 53 BPM. You can see in the graph below, showing my declining heart rate, and then a steep incline when I stopped taking Atenolol in February of 2023. 

I showed the above results to my primary care doctor, but she shrugged it off.

Against her advice, I decided to quickly wean off that medication. The dizziness, fainting, and fatigue got a tiny bit better, but the symptoms remained. I would later go to my heart doctor Ashchi Heart and Vascular, and they confirmed that coming off Atenolol was the right decision. It became apparent that for some reason (what seemed almost overnight), my body started having severe sensitivities to medications.

Besides Atenolol, there was only one other medication that I was on… Lexapro. At the time, I was still working, I was still functional. I had these odd feelings throughout my body: numbness, pins and needles and cold sensations on my knees, hands, and throughout my body. I also had this odd feeling as if my veins in my arms were on fire, and that I was constantly falling forward and to the right. It was tough dealing with the dizziness and nausea at work, but I got through it. It was now the end of March in 2023. I told my manager that I was considering getting off Lexapro as I was having these odd fits of tinnitus and feelings of seizures and serotonin syndrome several hours after I took my 5mg dose. He told me to be careful. I should have listened. 

NOTE: for anyone reading this that may be going through something similar with medication sensitives, prednisone was the solution here for me. I didn’t learn this until it was much too late. I will cover this more later.

Over the next week, I quickly weaned off Lexapro. This was likely the dumbest mistake I have made in my life. Within a few days I started having body spasms and what felt like seizures. By day 16 I was having full-blown earth-shattering panic attacks where the ground would move out from under me, the sky would pull backwards, and my body would tense up so much that I truly felt as if I were going to die. It was one of the scariest experiences I have ever gone through. I realized my stupidity in thinking that I could wean off this drug in a weak after taking it for 20+ years, and quickly tried to get back on the medication. Unfortunately, it was too late. When I would take the medication, the pins and needles, ice pack feeling and numbness that I was previously experiencing turned into what felt like thousands of razor blades slicing through my body, cutting into my ears, my throat and throughout my chest. I’ve had multiple broken bones, surgeries, bolts & rods put in my arm… you name it. NOTHING compared to the pain that I experienced when I took Lexapro again after coming off it. I had no clue what was going on at the time. Nothing made sense. It wouldn’t be until later that I would hypothesize about inflammation and damaged serotonin receptors, possibly from a virus like covid.

I got myself into quite the pickle. Without the medication, I would have severe panic attacks. It would be next to impossible to get sleep, but if, and when I did fall asleep, I would wake up dripping in sweat with this horrific feeling of doom and gloom. It was terrifying. It felt as if every nerve in my entire body was completely fried, and my gut was just so incredibly tight. Just imagine the worst you have ever felt and multiply it by a thousand. This is how I woke up and lived for over 15 months. My body would force me to get out of bed even though I was extremely tired. And once I did get out of bed, I was so incapacitated that all I could do was walk around aimlessly, holding myself with my arms tightly around my chest. At the time, I would describe it as being the closest thing imaginable to a zombie. I literally was incapable of doing anything. Even reaching for something like a glass to pour myself some water was too much to handle. Forget making food… or doing ANYTHING productive for that matter. There was just no way. In fact, I was so incapable of doing anything, that over the course of this disease I would spend an estimated $54,000 a year on food delivery services like UberEATS, GrubHub and Door Dash. Without it, I likely wouldn’t have eaten. My older sister, Melissa was even kind enough to try and make me food. Unfortunately, I had to put the food together, heat things up, and plate it, which was too much for me. Yeah, it was that bad. Eventually my dad would make me some scrambled egg things in a cupcake liner that I could just pop in the microwave when I woke up, which got some food in me. However, it got to a point where taking the liner off of the egg would get to be too difficult for me to do without collapsing from exhaustion. Once a week or so, my girlfriend would make dinner which was always a treat. Otherwise, it was UberEATS… or I wouldn’t eat.

(The incident happened in January 2023, and I got off Atenolol in February 2023)

“How did this happen!?”, I thought to myself. It consumed me. Every second of the day I was in pure agony, constantly researching since no doctor could give me answers.

Did Lexapro stop working on me because I changed my body’s chemical make-up? Or did a virus like Long COVID completely inflame all of my nerves?

Did I drink too much one night that caused some type of severe damage? 

Was it something like a vestibular migraine, vestibular neuritis, or central vertigo where maybe I suffered a small stroke? 

Did something happen to my genes in the way that I metabolize SSRI’s? I read how the CYP2C19 gene could play a big role in this and ordered a gene test for a psychiatrist to review. 

Nothing added up, and the doctors that I showed my medical test results to, shrugged everything off saying that the symptoms I was experiencing likely were not the result of my hypothesis. 

In the beginning of coming off Lexapro when I was having the panic attacks, I would take a Lexapro pill and within 2 hours, EVERYTHING was back to normal. I felt amazing! Thank God, I thought. I’m fixed! It wasn’t until about 28 hours later that the pain would come on… and it would come on strong. It was as if the pain (the feeling of thousands of razor blades slicing through me), was somehow connected to the drugs half-life, or maybe how I was metabolizing the drug. Or maybe my Central Nervous System was in overdrive and super sensitized to everything that was going in or around my body. I just couldn’t figure it out. All I knew was that I was no longer able to take the medication.

I lined up an appointment with a psychiatrist and asked him what he thought. He said that he had never heard anything like it. He said … “let’s try a different SSRI … Zoloft”. I agreed. I took half of a 50 mg Zoloft around 8:PM one night. Sure enough … within 2 hours, I felt completely fixed! Everything was right with the world. The next day (about 12 hours later), I took another half of a pill in the morning. I felt so good for the first time in so long that I decided to take a bike ride. I got back to my house and started to wrap up some work on the computer. It was around 6:PM when my body started to go numb again… and then the razor blades came on… slicing my ears, my neck, my chest, arms, legs … it was pure agony. I laid in bed again shaking and promised myself to never take Zoloft or Lexapro again. 

Over the next few weeks, the anxiety and depression, along with all of the other symptoms got worse. Everything got worse. Before, when I was on Lexapro (although suffering from dizziness and a dozen other symptoms), at least I was functional, and partially able to work. Now, I could barely make it through the day. Every minute was absolute hell. When I was on Lexapro, I was still sleeping at night. Now, a new symptom came on. It was as if my body had sensitized itself so much that if I had to pee (even a drop), my body would wake me up and not let me sleep until I went to the restroom. What’s even more odd, it seemed to happen on a schedule. Initially, I woke up every 20 minutes. Over time, I was able to go from 20 minutes to about 1 hour and 20 minutes. It was literally to the dot though. If I woke up at 3:AM… I could tell you without question that the next time I would wake up, it would be 4:20 AM. Sure enough. I would open my eyes and the clock would be 4:20 on the dot. Very, very odd. I later connected this symptom to severe anxiety and sensitization. As I write this, it has now been 15 months without being able to sleep more than a couple hours at a time. To make matters worse, the original pins and needles and numbness that I was consistently experiencing had turned into constant pain. It was no longer pins and needles, but rather a feeling of being sliced down my arms and through my inner thighs. I constantly had the feeling as if there were razors, or glass cutting through my cheeks above and below my mouth. And when I would try to go to sleep, I felt as if I was laying in fiberglass. Before I got sick, I had just spent hundreds of dollars on brand new super comfy bedding, which now felt like sheet metal. Literally, the ends of the sheets felt like they were cutting every part of my body that touched them. I now know with certainty that hell exists. I’ve been there.

Although I could barely function, I continued to line up appointments to see doctors, endocrinologists, neurologists, nerve specialists, pain & circumstantial specialists, ENT’s, chiropractors, therapists, psychiatrists, acupuncturists, and a whole slew of wellness doctors. Everyone made promises that they would get me better. They ALL took my money, but NO ONE had answers, or got me any closer to feeling a shred of relief.

Throughout my life, I had a few conditions that forced me to be a little extra cautious in terms of my health. In 2014 I experienced a severe vertigo attack that would hospitalize me for 18 hours. Some of the best neurologists at Mayo Clinic evaluated me and couldn’t figure it out. Looking back, I wondered if this incident played a role in my chronic dizziness that occurred after Covid.

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