Symptoms: Akathisia, brain zaps, insomnia, suicidal ideation, tinnitus, severe anxiety/panic, GI disturbances, extreme sensory sensitivity, too many to list
(Before I get into my husband's story, I want to mention that there was a Wall Street Journal article published about him on Christmas Eve. My account of John's story below is a bit more detailed, but I'm happy to share the article for anyone interested.)
John was a high school weight room PE teacher, basketball coach, present husband, and dad to our now almost 5- and 3-year-olds (3 and 1 year old at the time when this all started), and lived a very active life lifting weights multiple days a week, golfing, and playing basketball. He and I are high school sweethearts and have been together for 15 years and married for 10 years this May. He was and is my absolute best friend and love of my life. John has always loved life, loved the Lord, and just been an outstanding human.
In May of 2024, John was prescribed gabapentin from a pain management doctor for persistent sciatic nerve pain he was dealing with for over six months. He had injured his back deadlifting about a year prior and tried to rehab it through chiropractic, physical therapy, etc., but the nerve pain just got worse over time. (The only reason he went to the pain management doctor in the first place was to receive a referral for surgery to repair his herniated disc.) When the pain management doctor prescribed the gabapentin, all he told John was that it would help with the nerve pain, nothing about how to come off, potential side effects or risks with taking it.
John started the gabapentin four days prior to surgery, stopped without tapering because he didn't think it was helping at the time, had surgery in June of 2024, and resumed the gabapentin for the residual nerve pain post-surgery for the following three weeks (after being told by the surgeon it was "perfectly safe" with no mention of tapering), only being on 900 mg a day for a couple of days then tapering down to 600 mg, then 300 mg, then off over the three-week period. The day after he came off is when he became very sick with almost flu-like symptoms, but also could not sit still, what we now know was akathisia. He also stopped sleeping almost entirely.
This scared him very badly, especially once he realized it could be from the gabapentin, so after consulting with several different doctors, he reinstated the gabapentin at 300 mg along with Lexapro because his PCP at the time was certain he had developed anxiety after surgery even though he's never dealt with anxiety his entire life and has had three other surgeries prior to this. The gabapentin plus Lexapro did quickly calm his symptoms; however, John was now convinced he had anxiety at this point, so he decided to skip a dose of gabapentin and remain on the Lexapro the following day, and that's when all hell broke loose.
Since then, John and our family have been sent on a rabbit chase trying to find answers, each attempt at helping him making him sicker and sicker. He ended up tapering himself off over the course of six months. We paid an online tapering doctor $10,000 to up-dose John and make him worse after he told me John's care was in his hands and I didn't need to worry anymore. John has been to UChicago, Rush, Mayo Clinic, Northwestern, basically every medical system we could take him to. We've tried numerous other meds (nothing more than five days or so), each med just seeming to make him worse.
For the last nine months, he has lived with his mom since he has not been able to tolerate hardly any stimulation including sound, light, heat, or focusing/looking at anything, especially a screen. He has seen his children once for 20 minutes in the last five months. He's in utter darkness in a chair or bed 24/7 with his eyes closed, unable to walk due to it worsening his symptoms, peeing in a laundry detergent bottle, and being wheeled to the bathroom for bowel movements.
He had opted to stop trialing meds around four months ago, but the insomnia, akathisia, and numerous other symptoms were getting completely out of control, so he decided to try a micro dose of an antidepressant in an effort to calm his nervous system down. While it seemed to do that a little, it caused other heart and digestive symptoms along with head and stomach pain that forced him to stop after four days of taking it.
He has no hope and nowhere to go from here. How this is even possible, how he was not educated on what these meds can do, is beyond me. I thought doctors were supposed to receive informed consent from their patients, that means educating patients on all the benefits and drawbacks of each intervention and medication, prior to prescribing or treating them.
He has missed out on every single memory with our children and me for the last year and a half, almost two years. He adores our children. I visit him daily for a couple of hours, watching him writhe around in agony usually or swaying from side to side, begging to crawl out of his skin, oftentimes yelling and sobbing. He has all his mental faculties, so the heartbreak and devastation along with guilt eats him alive. No human should ever have to endure this degree of suffering with no end in sight.
I'm certain this is the worst kind of suffering that exists on earth. All we have left is our faith in Jesus. I beg God to take John if he's going to stay stuck like this. I pray someday everyone suffering silently in this hell gets the justice and redemption they deserve.