For the last two years I
have been making notes about my experiences with my persistent COVID symptoms
also know as “long COVID.” I am presenting an edited version of those notes
here. I am not posting this to throw myself a pity party, but to catalogue my
experiences. If you have long COVID the description below and the discussion of
possible treatments might be of interest to you.
I am confident that the
symptoms I experience 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.
Methods That I Believe Have Helped
Me with COVID:
· Healthy eating and daily exercise.
· A good sleep schedule and healthy bedtime
routine.
· Sleep restriction (not sleeping in) when
necessary.
· Anti-inflammatory foods and vitamins.
· Weekly fasting to reduce inflammation.
· Cold showers.
· Listen more than talk in social situations.
· Stop working three hours before bedtime.
· Daily paced diaphragmatic breathing.
· Stress reducing activities. Refrain from
talking about stressful things.
· 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.
Much of the sensation of
long COVID is felt in my face, head, and neck. This is probably due to advanced
inflammatory processes occurring in these regions. Because of this, I have
spent time massaging these areas and icing them. I have found that lying with the
back of my neck and head on a bag full of ice for twenty minutes noticeably reduced
some of my symptoms. It was very painful to ice at first and after two
sessions, it is not. Also, the feelings of heat, pressure, and discomfort in
these areas has been vastly reduced.
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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.
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.
