I don’t know if this post will resonate with most but I had to share my experience in case it helps someone else. It’s long only because I think some of the circumstances, surrounding events, and the journey are important. Plus, to be honest, it’s probably a little cathartic for me.
I’m 36 female, healthy, a runner (just ran a marathon in April), vaxed and boosted, who lives life to the extreme - work hard (too much in fact, NYC made me turn the corner to become a full blown workaholic), play hard (travel to obscure places every chance I get, never says no to a good time or a trip). I couldn’t have recognized this months ago but realize now that I’ve basically been running on adrenaline for years. Very high functioning and constantly looking towards what’s next.
I share this because it seems there’s a lot of commonality with long Covid sufferers which I found interesting.
Specifically my long Covid story:
I got Covid for the first time in late May of 2022. I was a moderate case, went down for 5 full days at the worst of it but didn’t feel myself until a solid 2 weeks later (the brain fog was untenable). By early/mid June though, I would’ve said that I had fully recovered. I was getting married after a 2 year hiatus in early July so not that there’s ever a good time to get Covid but considered myself lucky that I got it out of the way before the wedding.
Around this time (mid June), I was laid off at the company where I had worked for over 5 years due to supply chain issues and company financial pressure. I was completely blind sighted but had a wedding to focus on. After postponing for 2 years, I didn’t want anything to ruin it. I’ve always struggled with migraines (typically 3-4 a year) and at this same time, I had a migraine so bad that it sent me to the ER (my right hand went numb, I had an aura that took up my entire field of vision, and my heart was beating out of my chest). I went to the hospital to rule out a stroke. Got the clear (migraine as diagnosis) and went about life. The wedding was incredible, best day and time of my life. Was extremely exhausted and getting headaches but had no indication of anything sinister lurking behind my health.
After our honeymoon, I came home and decided to take advantage of being funemployed. I booked a solo road trip adventure to Scandinavia starting in Stockholm. Gave myself all of 3 days to recover from wedding mania and Hawaii jet lag so i honestly started the trip pretty tired. Other than the exhaustion, leaving for this trip was the last time I can remember feeling fully carefree and healthy.
I was 2 days into the trip and about 2 months post initial Covid infection. Felt really off but thought I was just battling jet lag. That was until I took a boat tour and visited a museum on one of the little islands in the archipelago. As soon as I got to the museum, my health fell off a cliff. My heart rate spiked to 140+ just standing. The fluorescent lights made it feel like the room was closing in on me. I lost my place in space and felt like I was walking on jello. My neck stiffened and my head was pounding. I got nauseous and thought I was going to pass out. I chalked it up to jet lag and tried to carry on with my trip. But I knew something was very wrong going down an escalator at the train station - was dizzy/lightheaded and felt like I was going to fall. i ended up spending 5 more days in Scandinavia in a sad, dingy hotel room thinking I was literally going to die with no idea how I was going to get myself home without help. It was one of the darkest times of my life.
And that’s basically how I felt for about 4 months. I had new/rotating symptoms pop up over that time but all in all, I suffered from:
- Chronic headaches: they shifted from 24/7 to setting in every day between 1-3pm and lasting through the night
- Light sensitivity: I couldn’t walk into a drug or grocery store without getting a full blown migraine and balance issues
- Heart rate abnormalities: my HR would spike to 160-200 just by walking down the block or up a flight of stairs (of note, I was in the best shape of my life post marathon right before this)
- Extreme fatigue: for the first 2+ months, I slept anywhere between 12-16 hours a day (sometimes more). The rest of those hours were spent lying on the couch or in bed
- Disequilibrium: I had terrible issues with balance, chronic dizziness, and visual motion. I would feel like I was on a carnival ride walking through crowds and once had to sit down in the middle of grand central station on my way to a doctors appt. I felt like I was walking on unsteady ground. Lost my independence getting around for awhile, needed an escort.
- Extreme nausea: sick to my stomach constantly. I would force myself to eat.
- Brain fog & more: Extreme brain fog, terrible trouble focusing, constant confusion, and almost no short term memory (I would feel like I had blacked out despite being stone cold sober)
- Vision issues: more on this but I felt like my vision fell off a cliff around the same time (went from 20/20 Vision to floaters, blurry vision etc)
- Sensations: These persisted for about the first month but felt like waves rushing through my body like when you’re coming off a carnival ride. At the end of every day, I would feel like someone had plugged me into an electrical outlet
- Dry eye: this set in about 6 weeks in and still persists. I’ve never had dry eye before and both eyes but particularly my right eye felt/feels like sandpaper
- Stiff neck: constant aches and pain in my neck. Lack of mobility. Often would spread to my jaw and up into a full blown tension headache
- Tingling and weakness in hands: My right hand in particular would get almost numb. Pins and needles feeling. Both wrists would feel extremely weak, feeling of losing significant grip strength).
- Debilitating anxiety: I’ve never suffered from an anxiety attack prior and usually stay very calm under pressure (rare to see me sweat figuratively) but I had crippling anxiety set in about 2 months in. I would work myself up to proper panic attacks some days and felt like I was losing my mind.
- Depersonalization/derealization: I had a hard time distinguishing between these two but felt completely disconnected from my body and my life/reality (nothing felt real), still occasionally suffer from this feeling (maybe dissociation?)
- Depression: I heard someone say this and I agree - I wasn’t suicidal per se but I could see how someone could get there (eg if I never got better and this was my new reality, I wouldn’t be strong enough). As someone who absolutely loved life most of their years, this one scared the shit out of me the most
- High blood pressure: extremely odd as I had just had an annual physical months prior and was given a gold star here
I had zero idea what was going on with me at first and spent a solid month going from specialist to specialist, including:
- Primary care
- 2 neurologists (the first completely gas lit me)
- Optometrist and Ophthalmologist
- Dermatolgist (I had stage 1 melanoma at 30 so needed to rule out cancer spread)
- Physical therapist
I had an MRI, CT scan, echocardiogram, and a holter monitor ordered over that time as well as countless blood work. I was suspected to have but effectively ruled out:
- Lyme disease and other autoimmune
- Melanoma metastasis
- Dissection (highly improbable)
- Heart issues
The majority of the above was ruled out but they did find:
- Mild bulging discs in my neck
- Higher than average ESR (inflammation) rate (29)
- B12 deficiency
- Heart valve abnormality (hereditary and not something to cause current issues)
- Small white lesions on brain MRI that were suspected to be from migraine in June
- Inner ear / vestibular disturbance
- What they thought to be vestibular migraine
- Astigmatism in my right eye (In fairness, I think when you go on a witch hunt for your health, you find everything)
I was prescribed:
- Vestibular physical therapy (8 weeks)
- Beta blockers for heart rate issues and high blood pressure (+ migraines)
- Ubrevly for migraines
- Physical therapy for neck/bulging discs
- B12 shots for neuropathy
- Steroid (prednisone) for inflammation
- Meclizine for dizziness and nausea
Each of these disparate diagnoses could explain some of the symptoms but not all. And nothing that seemed to connect them all despite the onset happening all at once. After reading more about long Covid on Reddit, hearing similar stories from a couple of former coworkers, and 2-3 months of nothing really helping me, my neuro and cardiologist both finally suggested that I probably have long Covid. They weren’t entirely sure what was going on but my cardio mentioned that I had some kind of dysregulation of my nervous system - nothing structural - but they didn’t know a lot about long Covid yet or what to do for it.
I devoured Reddit after that. I would spend hours reading others recovery stories, adopting new ideas and incorporating things that had worked for others. I would keep a list of things I wanted to try - try one, see if it worked, start another.
In addition to the initial list of prescriptions and PT, I ended up trying over the 4 months (mostly chronological)
- Acupuncture (2x week)
- Massages for neck (1x week)
- 72 hour fast and then intermittent fasting to promote autophagy
- Supplements: vitamins D, B complex, multi-vitamin, magnesium, calcium, potassium, astaxanthin, resveratrol, turmeric, omega-3 fatty acids, melatonin to sleep
- Migraine elimination diet: adopted from
The Dizzy Cook. Completely cut out all alcohol and caffeine and ate about 15 foods for 30 days.
- Homeopathic pills for headaches
- Paxlovid (months post initial infection)
I made some improvements - in particular, the vestibular PT definitely helped my balance and dizziness and the beta blockers helped calm my heart rate - but was still feeling debilitated / not myself / not independent or capable of going back into the real world. I was still getting headaches for about 12 hours a day, extremely fatigued, and horrible anxiety and brain fog.
Where I finally started to see and feel a step change was around the 4 month mark. In a 2-3 week span, I incorporated;
- Lexapro for anxiety
- Weekly IVs at an IV bar
- Chiropractor for my neck
- 2nd round of Prednisone (steroid) -
- Exercise: I went from marathon to bedridden overnight. I had read someone’s post who stressed the importance of exercise no matter how terrible it felt. I started with slow walks, and then really slow jogs, and then built back into long runs.
The last and what I believe the most important thing that I came across and incorporated was from longcovidcured.com - it’s hard to isolate and pick apart what worked and what didn’t but this was really immediate for me. Someone on Reddit had posted it on a longcovid thread - I was past the point of desperation and was willing to try anything. I started by listening to a few podcasts - the long Covid recovery podcast with Nicole Sachs and then the TLC podcast were really powerful. They hit me like a brick wall. I then watched the “This might hurt” documentary.
I knew that my body was stuck in fight or flight - particularly because of the way that this health episode came on (thousands of miles from home and alone) - and definitely had health PTSD from the experience but I had no idea what to do about it. I thought I was doing everything. And honestly the harder I tried, the worse it became.
The podcasts on the site featured people with stories as troubled - if not more - as mine. High functioning, healthy, grab life by the horns kind of people who were completely taken down by long Covid. Some suffered for well over a year. But they recovered by adopting what they called mind-body work. Meditation, breathing, journaling, etc. Basically a therapeutic cocktail to calm your nervous system.
I had the gift of desperation - all of my ideas had run dry - so I decided to give it a shot. I’m not exaggerating when I say that I felt about 70% better just listening to those initial podcasts. My headaches cleared up almost immediately. I then started listening to more of Nichole Sach’s podcasts (“the cure for chronic pain”) and doing the steps she suggested - for me, those were:
1) belief/acceptance that the mind and body are connected - and for me, I had a lot of unrecognized stress going in my life at the onset of this health episode that set me up for this (something I would not have been able to articulate or admit prior to this work), plus a huge amount of PTSD from my health
2) downloaded the curable app to make the process easy to follow and understand (use their guided meditations every day and their “panic button” a few times)
3) started meditation and journaling every day (thecureforchronicpain.com explains more on this)
I was an emotional wreck after the first journal experience. I realized I was processing both childhood traumas (that I never accepted as traumas) as well as current issues (job, family, etc) and PTSD from this health episode. I’ve truly learned so much about myself and what I was lying even to myself about for a long time. The emotional release of journaling followed by meditation has helped me calm my fight or flight response and keep it under the radar most days. Daily exercise is a requirement for me as well, plus good sleep (I sometimes get small flare ups when I’m really exhausted).
I still battle anxiety (though, not as chronic), sometimes weak hands (which I’m sure is connected to the anxiety), and a really sensitive nervous system. Any big stress sends me straight to fight or flight - we got some bad news on our dogs health recently and it sent me right back to depersonalization/derealization, plus brought the electrical waves back on. My nervous system is definitely still on a hair trigger. But I haven’t struggled with headaches or fatigues since starting this work. It’s been over 60 days and I feel 85-90% back to myself depending on the day.
My current routine that works for me at this part of my journey:
- Beta blockers
- Weekly IVs
- Daily journaling and meditation (following curable app)
- Listen to a Nicole Sachs podcast daily and/or when I’m feeling nervous or like a symptom is coming on
- Still taking most supplements
- Create distractions and jump back into real life: the more I avoided life, the worst I feel. Even if I’m anxious or dreading something (simple things at first like a run or seeing a friend or family member), I force myself to do it. Having that much quiet time was a vicious cycle for me, had nothing but time to be hyper focused on my symptoms.
- Rarely go on reddit Covid threads any longer. It was so helpful at first for the recognition that I wasn’t crazy, and then later to find new solutions and ideas (including what I believe led to my recovery) but now I find that I need to step away from them. The suggestibility of my brain is so sensitive right now and I need to not focus on my symptoms (which is easy to be reminded of).
I know this was very long but if you’re here, you probably have lots of time on your hands and feeling quite desperate. You truly have nothing to lose by trying new ideas. In truth, I know I had to hit rock bottom to even be open to something like meditation and journaling (would’ve brushed it off as very “woo woo” in the past). But that was my journey. And don’t underestimate the power of time - how you feel today is not how you’re going to feel a week, a month, or a year from now but healing it not linear so don’t discouraged. Keep searching until you find what works and don’t give up!