Long COVID relapse with brain fog and stuttering, much better after second vaccine and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Oct 2023
In their words
- Condition: Long COVID
I believe I'm a long hauler
In context ↗ - At worst: Severe
At times I can't even walk to my driveway without feeling like I'm going to keel over.
In context ↗ - Now: Much better
All, I have been doing great for a long time, but recently I had a bout of stuttering that came back.
In context ↗ - Began after: COVID
I was very sick for several weeks in mid-march.
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
Glacier 10635, a 42-year-old man, fell ill with COVID-like symptoms in March 2020: severe chills, fatigue, breathlessness and lost taste and smell. He improved, then relapsed badly in September 2020 with numbness, stuttering, brain fog and a cane to walk. Modafinil, viibryd, niacin, Benadryl and rest helped, and after his second vaccine his smell and fatigue improved greatly. Stuttering bouts still returned by 2023.
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What they tried
What they credit
Also tried
Their words about each treatment
- viibyrd · Helped
I'm currently on viibryd 20 mg, and I've been on it since October. ... it's not really fixing the issues at all.
In context ↗ - modafinil · Helped
That I use very sparingly as it can make you go 90mph then crash later on.
In context ↗ - Benadryl · Helped
I also take 1 Benadryl at nighttime to help sleep and fight histamine.
In context ↗ - l-lysine · Not said
I’ve also been taking l-lysine and niacin with the flushing kind.
In context ↗ - niacin (flushing kind) · Helped
I started taking niacin daily. That has helped a lot with fatigue too.
In context ↗ - rest, pace and plan · Helped
You have to make rest the number 1 item, then pace, and plan.
In context ↗ - gradually being in walking and mild/light exercise · Helped
gradually being in walking and mild/light exercise is helping me greatly
In context ↗ - COVID vaccine · Helped a lot
Since getting my second vaccine, my smell, taste is back to normal. My fatigue is greatly reduced
In context ↗ - icing head · Helped
I figured I'd try to ice my head and see if it helps. ... My mood has improved and speech improves.
In context ↗ - Excedrin Migraine · Helped
Another item that helps somewhat is taking an Excedrin Migraine.
In context ↗ - Wegovy · Not said
I also was on Wegovy for 1 month, but no longer able due to supply shortages.
In context ↗
Approaches: H1 antihistamines · Pacing · Physiotherapy and rehab · Stimulants · Supplements · Vaccination
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| mid-March 2020 | COVID-like illness: chills, severe fatigue, trouble breathing, lost taste and smellI was very sick for several weeks in mid-march. I never had a high fever but had severe chills, severe fatigue, trouble breathing (compounding with my asthma), lack of taste/smell.In context ↗ | Moderate | |
| May 2020 | approaching normal, back to exercise routines and working hard from homeIt seemed like almost 2 months went buy before I thought I was finally approaching normal.In context ↗ | Mild | |
| early September 2020 | major relapse: right-sided numbness, could not speak or walk without a cane, brain fog, widespread painI had a major relapse in early September, where half of me was going numb, and I couldn't walk without a cane or speak / remember clearly.In context ↗ | Severe | |
| 28 November 2020 | speaking clearly again, walking a mile without a cane, back at work from homeI’ve been getting better, speaking clearly, mentally back, and back to able to walk a mile with no cane. I’ve started back at work, from home, but taking it very easy.In context ↗ | Mild | Pacing and the energy envelope |
| 19 January 2021 | relapse: stuttering, taste and smell coming and going, meetings hardI have had a relapse recently. Taste/ smell comes and goes, and running webex meetings is tough.In context ↗ | Moderate | |
| March 2021 | fatigue flare after a two-mile walk, weekend resting in bedI actually had a flare up with fatigue after doing a two mile walk, so I will be very cautious with exercise. I ended up resting in bed all weekend.In context ↗ | Mild | |
| 15 August 2021 | smell and taste back to normal and fatigue greatly reduced; stuttering and fog remainSince getting my second vaccine, my smell, taste is back to normal. My fatigue is greatly reduced (I still have some times, but less frequent and less severe).In context ↗ | Mild | COVID vaccination as treatment |
| 19 October 2023 | stuttering and confusion while workingrecently I had a bout of stuttering that came back. One day trying to work though it I was getting confused. The more I focused/ concentrated, the worse it got.In context ↗ | Mild | |
| 19 October 2023 | doing great long-term, with occasional stuttering bouts that settle with restI have been doing great for a long time ... I seem to be doing better a few days later, with lots of rest and trying not to take on too much at work.In context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- Modafinil / armodafinil“That I use very sparingly as it can make you go 90mph then crash later on.” In context ↗ Made symptoms worse
- Vilazodone (Viibryd)“Basically now since I've been on it a while I feel lack of emotions overall.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I actually had a flare up with fatigue after doing a two mile walk
In context ↗ - Brain fog
I had severe brain fog, like someone deactivated part of my mental capacity.
In context ↗ - POTS & dysautonomia
I couldn’t speak, mental fog, dizziness, and severe fatigue and needing a cane to walk.
In context ↗ - Sleep problems
I also take a Benadryl at night to help me sleep, but still have problems sleeping.
In context ↗ - Pain & fibromyalgia
I started having muscle spasms and lots of pain.
In context ↗ - Headaches & migraine
I've also had bad migraine symptoms.
In context ↗ - Breathlessness
trouble breathing (compounding with my asthma)
In context ↗ - Heart symptoms & palpitations
I had a little bit of chest tightness.
In context ↗ - Muscle weakness
It was getting hard to walk, I would need to hold onto walls or furniture for balance.
In context ↗ - Neuropathy & tingling
Then, I started going numb on my right side.
In context ↗ - Anxiety & low mood
My mood has improved and speech improves.
In context ↗ - Flu-like symptoms
I never had a high fever but had severe chills
In context ↗ - Loss of smell or taste
lack of taste/smell
In context ↗ - Tinnitus
I also have lots of ringing in my ears
In context ↗ - Vision problems
Vision is blurry sometimes.
In context ↗
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