My Experience with Persistent COVID Symptoms: Long COVID

 

For the last two years I have been making notes about my experiences with long COVID. I am presenting an edited version of those notes here. I am confident that my symptoms are due to long COVID because they started immediately after my first infection and became worse after each subsequent infection. Also persistent COVID symptoms occur in more than 10% of people who have contracted COVID and I have had COVID four times.

My symptoms, in order of severity, include insomnia, fatigue, brain fog, tinnitus, vertigo, hyperacusis, memory issues, slurred speech, minor headaches, difficulty focusing and concentrating, and altered cognition. Overall, I seem to have a cluster of symptoms that has been described by others as “post-concussion syndrome” and that commonly accompanies long COVID. This syndrome is generally characterized by discomfort in the head area, dizziness, and problems with concentration and memory. For around two years now, my head has been feeling heavy, inflamed, and sore. If you have long COVID the description below and the discussion of possible treatments might be of interest to you.

 

The General Feelings I Have

I always feel faint and dazed. I am often dizzy and have vertigo. It often feels like the world is moving around me and my head is spinning or swimming. My whole head rings or reverberates. I feel like I’m floating. I feel lightheaded, woozy, and wonky.

 

I feel like a part of my brain is shut off, like it’s not running on all cylinders. It is as if I had a stroke, a traumatic brain injury, or like I am concussed. I often feel groggy like I just woke up out of a deep sleep or like I’m “coming to” as if I just regained consciousness or as if I am stuck in a dream. I feel hung over or like I have been drinking all day. I feel like I have been drugged or poisoned. In social situations I am often “out of it” and I have trouble keeping up with conversations. I feel like I am in a permanent dream state. Sometimes it feels surreal, and this can be accompanied by feelings of depersonalization or derealization. I feel like I could get knocked out easily in a fight. I often sense that I am on the verge of losing consciousness.

COVID Timeline:

I first got COVID, September 12, 2021 at a Concert.

I got Omicron COVID January 25, 2022 after a weekend with friends.

After getting the COVID booster in February 2022 I had intense dizziness and lightheadedness. The booster seemed to cement my long COVID symptoms.

I got COVID for the third time September 14th, 2023, after visiting Universal Studios. I believe I had partially recovered but this strongly accentuated my symptoms.

I got a very mild case of COVID for the fourth time from a friend December 29, 2023. This caused a minor flare up in long COVID symptoms.

Each time after getting COVID the tinnitus has become louder, I am dizzier, it is slightly harder to breathe, it is harder to sleep, and I have more brain fog and confusion. Each infection had the same general feeling, very different from any virus I had before. It was accompanied by a distinct psychoactive flavor, as well as motor disinhibition and light headedness.

The Insomnia:

I have trouble sleeping from two to four nights per week. I have been up for as many as two full days at a time. I have slept two hours per night for as many as four days. Sometimes, I am not even sleepy after being up for more than 30 hours. My mind is usually not racing or anxious when I am trying to sleep. I just lay in bed in the dark calmly without TV, phone, or any distractions, for up to eight hours at a time yet sleep may never come.

I startle in my sleep and this known as “hypnic jerks.” Sometimes this wakes me up. A girlfriend told me that I have a serious problem, and that if I don’t start sleeping better, I will eventually turn into “a homeless person who shakes.”

A new study shows that long COVID may be largely caused by or at least associated with low serotonin. Low serotonin drives anxiety, depression and difficulty sleeping. Since getting long COVID, I have lost a lot of muscle mass. Sleep loss is known to cause a decrement in testosterone, and this may be the reason I have lost muscle. Sleep deprivation is also known to decrease positive emotions and increase anxiety symptoms. A recent study showed that, “The researchers found that when tryptophan absorption is reduced by persistent viral inflammation, serotonin is depleted, leading to disrupted vagus nerve signaling, which in turn can cause several of the symptoms associated with long COVID, such as memory loss.”

The phenomenon where the brain starts "eating itself" due to lack of sleep is scientifically referred to as "neuronal autophagy," a process that becomes excessively active during sleep deprivation. Under normal circumstances, autophagy is a crucial maintenance mechanism where cells, including neurons, degrade and recycle their own components, thereby removing damaged or unnecessary cellular parts. With insomnia it can become injurious.



The Tinnitus:

My ears ring. There is a constant screeching, buzzing, hissing, whirring sound in my ears. It is very loud. There is a different sound in each ear. Sometimes it is almost staggering. It can feel like someone is shooting me in the side of the face with a laser or like there is a cicada in my ear. Also, my head is fuzzy and buzzing palpably, not just auditorily. 

The volume used to take my breath away and make my breathing shallow. But it no longer affects my breathing because I have spent a lot of time listening to the tinnitus while practicing paced diaphragmatic breathing.

My tinnitus becomes much louder after I am exposed to loud sounds, sometimes for several days at a time. This means that I can no longer go to clubs, bars, karaoke, movie theaters, house parties, dance classes, even many restaurants are too loud for me. Even Disneyland was too loud for me, my ears were still ringing especially loudly days after. I can’t go to many social functions, even things like game night at a friend’s house, because the music is inevitably turned up too loud or people’s laughing and yelling exceeds 100 decibels. I often wear ear protection now (ear plugs or earmuffs) and it helps but only so much. There are still many places I cannot go even with ear protection.

 

When I had my ears tested, I did not have hearing loss.

 

I have hyperacusis. I experience many loud sounds as unbearable. For instance, being in a club or bar with loud music feels like it is causing acoustic damage. Sirens blare and speakers screech and squeal. When some sounds are loud enough it sounds like they become garbled. It took me some time to realize that no one else hears this. For instance, loudspeakers sound like they are distorting, but I realized that the actual speakers are not failing under the volume, it is my ears that are distorting the sound. It sounds like paper is tearing in my ear drum or rattling like a kazoo. Sounds over 90 decibels are jarring, and I feel like they are going to injure my ears.

 

Sometimes, my ears pop and squeak in unusual ways during yawning. The valsalva technique seems to provide some relief to my ears. These things tell me that the tinnitus may not be due to neurological damage and may involve pressure in or around my auditory canal. Thus, the issue may be inflammatory, due to muscular tension (perhaps in the jaw) or some combination of these. 

Other factors known to contribute to tinnitus include sinus infections, fevers, flu, emotional stress, caffeine, nicotine, alcohol, some medications like aspirin, ibuprofen and other non-steroidal anti-inflammatory drugs.

 

 

 

Vertigo:

I have a strong sense of vertigo which is a false sense of rotational movement. I’ll be sleeping in my bed in the dark and I have a sense that the world is tumbling around me. It’s like I am spinning in a washer or dryer. As soon as I imagine the world spinning, I can feel it spinning.

 

I have almost fallen over a few times in the shower. I have started to fall backwards four times. Last week I fell forward and hit my head. This is unlike me especially given that I am trained in tumbling, gymnastics, and yoga.

 

Neurological and Post Concussive Symptoms:

Long COVID has been associated with “post concussive symptoms” where people have symptoms that are consistent with concussion or traumatic brain injury. When I read about this is resonated strongly with my experiences.

I feel like my brain is fried or cooked. I am often fatigued and exhausted. It feels like I have been hanging upside down for a long time. Or like I had a bad fight or sparring match yesterday and I got pummeled in the head. My head feels especially sensitive and painful after jumping on the trampoline, doing cartwheels or somersaults, or going on a roller coaster (I have since stopped doing these things). I have had mild closed head injuries before, so I know what it feels like. Now, I chronically feel punch drunk or like I have had my bell rung. My head pounds sometimes. I have very minor chronic headaches that are not painful, just uncomfortable.

 

I feel half dead or half brain dead. My head feels very heavy. I feel like I’m barely hanging on to consciousness, near the brink of unconsciousness. There have been a few times where I came close to passing out or blacking out. In these situations I have had to lean on a wall, grab something to hold myself up, or lower my body to the floor. Sometimes it feels like I am having an allergic reaction or like I have heavy allergies.

 

In late 2023 I experienced minor visual hallucinations that a neurologist would call visual phantoms:  An area below and to the right of my visual focus started flickering and changing colors. If I put my hand in that area of my visual field, my hand would flicker.  No matter where I looked, a large part of the right side of my visual field would flicker, containing zig zag lines of different colors.

 

Memory and Working Memory Deficits:

I have serious word finding difficulties. I feel cognitive overload and overwhelm. It’s difficult to follow a movie or lecture and often I must rewind during a TV show because it’s hard to concentrate on the dialogue. I have difficulty expressing my thoughts and formulating long sentences. Talking to people, conjuring the energy to socialize, and formulating speech is highly depleting. Due to this rapid social exhaustion, I have been socially isolating myself.

Ever since my second infection with COVID my speech has been slurred. I have had poor pronunciation of words, mushmouth, and jumbled speech. I have to be mindful not to slur when speaking to people. When tired, I do it more, and people ask me to repeat myself. Interestingly, my internal monologue is also slurred. Most of my subvocal speech involves slurring. Slurred speech is often due to stroke and Long COVID is strongly associated with multiple small strokes and blood clots in the brain. Studies show inflammatory brain tissue damage and blood clot damage in long COVID brain fog patients. This makes me concerned about the extent of cognitive morbidity that I have sustained.

 

It feels like my mind is not stable. Rather, it’s spinning, and its contents are being mixed around and dropped. I will have an impression, word, phrase, or idea in mind and if my attention strays for a split second, sometimes I won’t be able to remember what I was thinking about. When listing things to myself, I will easily forget items I just listed and then get confused. I am constantly having working memory lapses that I have never had before. People with prolonged COVID-19 symptoms have serious thinking and memory deficits, one published study observed effects comparable to a 10-year increase in age in cognitive tests. I feel like my brain aged 20 years since COVID.

The Inflammation:

I believe that my head and brain are experiencing inflammation, possibly minor encephalitis and that this may account for many of my cognitive symptoms. My body seems to be affected by increased inflammation as well. Much of my body is sore and achy (myalgia). I get soreness, stiffness, tenderness, and cramps in my muscles. I have joint pain and weakness. My fingers and hands hurt and are not as strong as they were. My knees hurt and I had to stop martial arts. My big toe burns. My cervical, thoracic, lumbar, and sacral spine are sore.

It is common for patients with COVID-19 to experience neurological symptoms as a result of an intensified state of inflammation known as “cytokine storm.” “Multisystem inflammatory syndrome (MIS) is a rare but severe condition seen in people infected with SARS-CoV-2 where inflammation occurs in different internal and external body parts like the heart, gastrointestinal tract, skin, and brain.”

I have no numbness, burning sensations, palpitations, or neuropathy.

Things That May Have Played Causal Roles:

Watching violent or suspenseful movies and playing stressful videogames is practically intolerable for me now. This tells me that these things may have caused some trauma or vulnerabilities or inflammation. The inflammation caused by COVID infection may have exacerbated these issues.

I went to a nightclub a couple times each month for much of my 30s and it is clear that blaring music caused acoustic trauma. 

I clench my teeth, suck, my tongue and have more tension in my mouth, jaw, and head than I did before. Some of this is due to increased muscular bracing. I spent a lot of time in the last few years chewing on pieces of rags and this may have increased the tension in my jaw. Boxing and sparring with and without head gear may be partially responsible for some of my symptoms. The movements and inversions in gymnastics, tumbling, and martial arts may be partially responsible for my symptoms.

I got the Pfizer vaccine. Studies show that tinnitus seems to be most strongly associated with the Pfizer but not the Moderna vaccine. 

 

There is a link between hemochromatosis (which I have) and tinnitus. There is also a link between hard nose blowing (which I do) and tinnitus.

Forcing myself to work at a computer for many hours at a time may have played a role in my stress pattern. I have workaholic features and often I work up until bedtime. These days, sometimes I feel ill after working ten hours or more at a computer. My ears, head, and breathing are affected. I have read that people with long COVID need to take time off from work in order to heal and should avoid anything physically or mentally strenuous.


Methods To Reduce Long COVID:

Healthy eating and daily exercise. A good sleep schedule and healthy bedtime routine. Sleep restriction when necessary. Anti-inflammatory foods and vitamins. Weekly fasting. Cold showers. Listen more than I talk in social situations. Stop working three hours before bedtime. Daily paced diaphragmatic breathing. Stress reducing activities. Massage. Yawning and chewing exercises. Meditation. Yoga.

I try to find aspects of long COVID as calming. I try not to fight it, just to observe it, like a butterfly that I am not trying to touch or control. I try to ride the wave of the symptoms nonjudgmentally.

 

 

 

My Experience with Acute COVID

 

During my COVID infections, I was never in any pain and had very little trouble breathing. My symptoms included:

 

Fever and chills

Cough and sneezing

Shortness of breath

Fatigue

Muscle or body aches

Headache and muscle aches

Loss of smell but mostly retained taste

Sore throat

Congestion or runny nose

 

 

There were a few hours where I could barely stand, but most of my time with COVID was relatively mild. There were a few days where it was very hard to do work. I’ve never had any trouble working while I’ve been sick before. With Omicron, I went from having no symptoms to having trouble standing within four hours.

 

 

When I had COVID, there were psychoactive aspects as if I were on drugs. My state of consciousness was different, obtunded. Some of my lower motor centers must have been disinhibited because it was very clear that some motions, movements, and forms of coordination were enhanced. For example, it felt very easy to dance with acute COVID. I had nasal irritation of the nasal epithelium.

 

 

I was very achy and sore and it was very easy to find tense muscles in partial contraction and to stretch and rehabilitate them with anti-rigidity. The increased achiness allowed me to locate old sprains and injuries. For example, I found the sprain in my ankle and index finger. I found the worst part of my neck on both sides of C6. I found the worst muscular knots along my iliac crest.

 

 

There were times during acute COVID infection where I felt delirious. I experienced memory flashbacks from childhood. I had vivid recollections which would normally be inaccessible or take serious effort to retrieve. At one point, I was standing outside in the grass and I was hit with the smell of the cleaning products used at my elementary school. It was a smell I haven’t smelled in 30 years but I’m 100% sure that I recognized it for what it was. I think it was basically an olfactory hallucination. There was some perceptual and memorial naïveté as if I was on a hallucinogenic or psychedelic drug. Familiar things looked new and different. One night I didn’t sleep at all and the next day I had minor visual hallucinations. As I looked down at my shoes, the concrete around them was bubbling and black dots were appearing and disappearing.

 

When I got COVID the second and third times, I knew immediately that I had it as soon as the symptoms came on because I’ve never had a fever like that before. It’s like a psychoactive heavy blanket. My symptoms fluctuated as the infection progressed.

 

My first time with COVID my Kaiser PCR test came back positive. It took me a while to realize that I had totally lost my sense of smell. I guess I didn’t really miss it. A fresh cut apple or strawberry right under my nose had no aroma at all. My taste was affected too but not lost completely. I could feel the texture on my tongue, the temperature of the food, and a little bit of the taste.

 

I had serious memory issues while I had COVID. I had phone numbers in my call log that were recorded in the last week with names that I didn’t recognize, and I had to go to the text messages to figure out who those people were. I watched two nature specials while sick and within that week Netflix recommended them again, but it took me several minutes to determine that I had watched them just a few days prior. For the first time in my life I got confused about what app I was using on my phone. I caught myself trying to send a text using my Safari Internet browser. I would be using an app and I forget what I was doing, and other things like that.