Whats Wrong With My Brain?
Dr Huberman, I hope this reaches you, because right now I am grasping at straws and searching for that last little bit of hope out there. I apologize for the length and complexity of what I am about to type. A quick background on me. My name is Zac Strohmeyer. I am 41 years old and live in Hollidaysburg Pennsylvania, about two hours east of Pittsburgh. I come from an upper middle class family and had what I felt was a relatively normal childhood. I experienced some emotional trauma growing up by way of verbal threats of abandonment as a way of controlling a very high energy child. There was never any physical violence. This led to a later in life diagnosis of obsessive compulsive and generalized anxiety that I had been subconsciously dealing with since my youth. I would say that it never limited me or set me back and I managed it quite well. Up until last year I would have considered myself the life of the party. I was a world traveler and had a zest for life. I’ve been employed at UPS for almost 20 years with almost 18 of them as a delivery driver. I excelled at my job and I actually think my OCD helped me thrive; I was in the top 5 percentage of drivers in terms of efficiency. I never missed work and if anyone needed bailed out I was always the first one they would call. I had really good health from my childhood up until the age of 30. As a child I got very violent migraines but luckily I grew out of them. Prior to age 30, I sustained two documented concussions. The first was from my youth around the age of 12 from flipping over my bike handlebars. The second one was at the age of 29 from a motorcycle wreck where I hit a rock that washed out on the road. Luckily I was wearing a helmet and it took the brunt of initial impact. In addition to the concussion I developed post concussion syndrome and tachycardia; both resolved on their own. Fast forward to ten months later on September 2nd 2012 I had an ischemic stroke with a blood clot at the base of my brain. I was alone at the time and drove over to a buddies house (no idea how I made it as I was very incapacitated) and he called 911. From onset until the ambulance arrived I would say was 45 minutes. I remember getting put into the ambulance, nothing of the ride except for when we arrived at the hospital and I had to sign off on the ambulance ride and I could not spell my name. I remember coming to in the emergency room and everything felt normal. My speech was normal and I was interacting as if nothing had happened. Apparently once I got to the hospital they did a CT scan on me and it came back normal. About 30 minutes later while in the ER room talking with my friend, I became incapacitated again and could not speak and had a thousand-yard stare. They put me in the MRI and that is how they found the clot. The neurologist came in and told me I had a stroke. If I remember correctly you can see the stroke damage on the left side of my brain. I believe it's on the frontal cortex but I could be wrong and it could be the parietal lobe. I was in the hospital for almost a week and was off work for about two and half months. I transferred my care to UPMC Mercy in Pittsburgh. They did a bunch of testing and my doctor came to the conclusion that this was a fluke and that I had a 99.9 percent chance that it would never happen again. I did have cognitive difficulties after the stroke and was left with slight facial drooping on the right side of my mouth that is only really noticeable when I wake up and my muscles are very relaxed. The hardest part afterwards was dressing myself. It was more so the pattern of okay, you put your underwear on, then your socks, then your pants etc. I would constantly leave the house for work and get there and realize I didn't have my belt, I put on shoes instead of my work boots or that I would forget to put on my collared UPS shirt and would only have my brown undershirt on. It took a while for this to resolve and if anything I only forget my belt now. One thing that has remained is that it normally takes me several attempts to leave my house. I always leave something behind whether it be my wallet, phone, sunglasses etc. For a while I would get random aches in the back left region above my ear that would affect my spatial and cognitive abilities. If it happened the only thing I could do was sleep it off as it ruined my entire day. It took a few years, but that has resolved as well. I returned to work and picked right back up where I left off. It did not affect my ability to do my job. Then on Valentines Day 2013 while I was working I suddenly became disoriented and could not figure out how to put my route together. I pulled over and called my boss and he came and got me and drove me to the hospital. About 3/4ths of the way there I lost the ability to speak. I was diagnosed with a TIA. I did it in reverse order, I had the TIA second. After several days in the hospital I was discharged and switched neurologists from UPMC Pittsburgh to John Hopkins Bayview. They ran every blood test they could, tested for the rarest conditions such as Fabrys, Russel’s Viper, Lymes. The only thing to come out of the bloodwork was that I am heterozygous for the MTHFR gene mutation. They followed up the blood work with more tests. They did Carotid Cerebral Bilateral, Vertebral Arterior Unilateral, Arch Aortogram and an EEG. Again, they found nothing, I was in perfect health. Also of note, I passed both my drug tests after my strokes (drugs aren’t my thing), and I wasn’t on any medication prior to the strokes or ever in my life for that matter and was not prescribed any after since my labs and everything else were perfectly normal. After being off of work for 3 months I returned and resumed life as normal. Although the fact of being faced with your own mortality is traumatic, it never inhibited me from continuing living a normal life. Everything was great for the following 10 years and then 2022 happened. My 40th birthday was Sunday April 3rd, and my friends and I decided to go out of town on the 1st and 2nd to celebrate. Before departure I saw a new PCP to get a check up as it had been years since I've had the need to see a doctor and my previous PCP retired. He ordered labs and sent me on my way with a 3 week follow up to discuss the labs. Four days after my birthday, I tested positive for Covid. I had a cough for one day and the rest of the time I had a fever that wouldn’t break. I isolated myself in my bedroom and tried to sleep as much as I could but would wake up quite often covered in sweat or freezing. It took about 7 days for the fever to break and I went back to work after 10 days. Again, everything was normal. I returned to my PCP to discuss my labs and he asked if anything had changed and I informed him that I got Covid and now I have this burning above my left eyebrow that won’t go away. He chalks it up to lingering effects from Covid and that we don’t know enough about it yet and sends me on my way. A week later is when things started to go sideways. In addition to the burning above my eye, I notice my heart rate is rising dramatically everytime I get a shower to the point that I feel like I’m going to have a panic attack. On Saturday May 7th is when everything kicked into high gear and my life became unmanageable. The best way to describe it is as if somebody took my frontal lobe and squeezed it and wouldn’t let go. I thought I would just sleep it off but I woke up on Sunday and met my family for Mothers Day brunch and had to leave early because something wasn’t right, my frontal lobe got tighter. I drove over to their house and explained to them what was going on and called my boss and told him I needed time off because something is going on in my brain and I have no idea what. I went to my family doctor and was dismissed and sent on my way. At this time I am stuck in what I can only describe as the most horrific and torturous state I have ever experienced in my life. I was in a 24 hour a day 7 day a week anxiety attack, my body was internally trembling/humming, every time I got a shower I had a panic attack and my sleep went from 7-8 hours to 45 minutes a night if lucky. It was almost like my brain had vapor locked. I had to move back home because I could no longer care for myself. I laid on my parents couch everyday suffering just praying to god to either kill or fix me. I went back to my doctor and pleaded with him and the only thing he told me is that I’m bi-polar and manic. 1. I have never had a bipolar diagnosis, nor an inkling that I was. I would think that in 40 years someone would have noticed that something was off at some point. 2. My bed is for sleeping in at night and that's it, never once have I had a depressive episode where I couldn’t leave the house or my bed. 3. I know mania can take on many states but everyone I’ve talked to said being manic leaves them feeling euphoric and they do things that they don’t even remember such as stealing, multiple sexual partners, gambling, spending etc. I also had no grandiose thoughts, just suffering. 4. I asked him how he came to his conclusion and he informed me that was only wrong one time in the 80s and to trust him. That's the first major red flag, secondly if that's the case then why didn’t he send me to crisis or prescribe me medication to help alleviate the symptoms? At this point my parents were beside themselves and didn't know what to do. The earliest I could get in with my neurologist at Hopkins was June 25th and it was the middle of May. A day or so later at 3 in the morning after getting about 15 minutes of sleep my dad drove me to the ER of a better hospital an hour away. They did a CT, and pumped me full of a bag of something and discharged me, nothing changed. I'm only getting worse. Every psychiatrist was booked months out so I had no other options than to go to my local hospital and check in under crisis. They have a contract that upon discharge you see a psychiatrist within 24 hours. I was in crisis for maybe 2 hours before they released me as I wasn’t a harm to myself or others. They prescribed me vistaril and I had an appointment the following day with what I thought was going to be a psychiatrist; it ended up being a PA instead. She had no idea what was going on and put me on 25 mg of Lamictal with plans of going up weekly. In the meantime I just laid on the couch and cried, not because I was sad, my brain was attacking my body/central nervous system. My neurologist had a cancellation and I was able to get in on June 16th. He felt the burning above my eye was trigeminal neuralgia and had no idea about my frontal lobe. After leaving Hopkins I broke down on the ride home. I went home and googled luxury rehabs and found a place in Ephrata Pa called Retreat Behavioral Health and entered on June 18th. This place was god awful, it was more like a prison. They were treating me for non existent depression and I saw a psychiatrist on zoom once a week for 5 minutes. They had me on remron, vistaril, gabapentin, trintellex, lamictal, trazadone and one or two other meds. Three days into my stay I broke out in over 500 different rash spots from the top of my feet to the top of my shoulders. Needless to say I only got worse there. Everyday I was there the nurse would put notes in my chart that Zac isn’t doing well he needs to be seen by the doctor. It all fell on deaf ears. It got so bad there that I actually skipped my class and locked myself in the bathroom and was going to hang myself by my ID lanyard. I have never been suicidal nor have I ever had suicidal idealation but at that time I broke; the only thing that stopped me was picturing my parents getting that phone call. After 26 horrendous days there, I was discharged on Wednesday July 13th and transferred immediately to Water Gap Wellness in the Pocono Mountains. Within 24 hours of being there, I saw a psychiatrist and explained everything that was going and she prescribed me klonopin and buspar. There was a mix up and my new meds didn’t show up until Sunday and Retreat sent none of my other meds over so I had to detox cold turkey from 6 meds while awaiting my new ones, it was more hell.. It was about two-three weeks into my stay at Water Gap that the grip in my forehead finally released after almost three months. For almost three months straight I somehow managed to survive being in what I perceived as an anxiety attack that never once relented. After it finally broke my frontal lobe felt like how a black and blue mark feels once it reaches peak intensity before it starts to subside. It was so sore from the previous three months. I wish I could say that was the end and I lived happily ever after. However after it broke I could not go outside for days because my eyes became very sensitive to light. When I would watch tv, every 4 seconds my eyes would involuntarily move to the left of the screen. I developed a tape worm floater in my right eye that still persists to this day, however my eyes no longer shift. I also developed persistent tinnitus in my left ear. They were able to get me back to about 70-75 percent and I was discharged on September 15th. I resumed independent living but it was a real struggle. My cognitive abilities were extremely compromised. I’d leave the house and not remember to shut the front door, I’d take my night meds in the morning and vice versa if I even remembered to take them at all. I would have to ask my roommate if I showered because I honestly couldn't remember. I’d constantly make coffee and forget to place the cup under the dispenser. Bills didn’t get paid for months, not because I didn’t have the money but because I simply forgot. I did neuropsych testing down at John Hopkins and did well on the listening parts and struggled with visuals. Although I was finally able to get 7-8 hours of sleep a night every morning I woke up every morning in a heightened state. Even though I had anxiety previous to this, I never woke up in a panicked state before. In April after not seeing any improvement I decided to go back to Water Gap from April 25th until June 20th. Now I just feel like I am in a permanent state of dementia and I still have no answers. I said before how I would have to ask my roommate if I showered after my first stay at Water Gap. Now there have been multiple occasions in which I forgot to shower at all, sometimes 2 days in a row. Everytime I get a shower my heart rate jumps to anywhere from 135-150 bpm (I have no negative connotations with the shower, it's the temperature of the water that sends it spiking.) When I leave my parents house they stop me and question me on if I have all of my possessions with me because it's not just one thing I'm leaving behind anymore, it's everything. My frontal lobe either aches or burns. When it aches, simple tasks such as driving home become trivial and on several occasions I have turned up the wrong street, or tried to go up the one way to get to my house. I did 8 rounds of ketamine infusions in hopes of resetting my frontal lobe but unfortunately I saw zero benefits. I had a consultation for TMS but it took them a month and a half to tell me I was a candidate but let's try a Tricyclic Antidepressant first “for insurance purposes” or you could just pay us 7,000 and we can start now. They could sense my desperation and played the long game hoping that I would give in and just shell out 7,000 instead of them getting a reduced payment from my insurance. I've tried acupuncture and have abstained from alcohol for 570 days with no plans of ever drinking again. Not that it was a problem but watching your podcasts shed light on how unhealthy it really is. Nobody can put a finger on what's going on or what happened and I am ready to throw in the towel; but I am a fighter. If you’re reading this you’re probably thinking there's no way in hell all this correlates but I swear this has been my reality for the past 17 months. I just want my life or some semblance of what my life was back. I want to return to work but I can’t get behind the wheel of a UPS truck right now, it would be a danger to the public. I guess my question to you is, is there anyone at Stanford or Stanford Medical who can help me. I will hop on the first flight out. I already told my family I will go bankrupt trying to get a sense of quality of life back. Stanford is known for groundbreaking research, are there any clinical trials I can join? Would the Koret lab be of any help to me? I am literally willing to try anything. I will gladly be a guinea pig for science and you’re more than welcome to film it for your podcast. This is probably too long for an AMA but any help or advice you could give me would be greatly appreciated. If you have any questions, please feel free to email me at zacstroh@gmail.com or my phone number is 814-937-5775. You can also reach me via instagram @zacstroh and you'll also be able to see the life I used to live and that I'm not just some crazy. Thank you for your time, and helping spread your knowledge for free to those of us who want to improve the quality of our lives! Zac Strohmeyer
How does vestibular therapy work?
Sustained a Traumatic Brain Injury in 2019. According to the MRI I had "encephalomalicia with some susceptibility artifact at the anterior corpus callosum...appears to be 2 small areas of susceptibility artifact adjacent to this level possibly reflecting remote hemorrhage." Underwent vestibular therapy for 14 sessions (operational and cognitive therapy were not required). By the end I had better balance ability and coordination than I ever had in my entire life. I could walk straight down a hallway with eyes closed without running into walls. I remember my therapist telling me that race car drivers would undergo similar training in order to endure driving at such high speeds. Therapy not only helped me, it improved my life and made me a big believer in neuroplasticity. I never thought my brain could heal the way that it has or still have the potential to improve, even in my forties. My neurologist told me I would have to be careful for the rest of my life, eat healthy and get adequate sleep. "With a concussion, 1+1 does not equal 2," he said. Over time things are still improving, but I still get slight pain in the area of trauma if experiencing extreme stress, lack of sleep, or anger. (The pain feels like hot needles pricking into my brain). The only thing that hasn't gone away is nausea when I drive on sharp curves (I suppose this is because I don't do it often enough to "re-train my brain" into normalcy). Vestibular therapy was an incredible experience. Any insight as to how this works would be greatly appreciated. Thank you for YOUR interest in science, Dr. Huberman. It's a huge help daily in so many things one would never even consider.
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