Long COVID with POTS, panic and brain fog, now near normal on a beta blocker and keto
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2023
In their words
- Condition: Long COVID
My main symptoms are dysautonomia (adrenaline dumps, panic attacks, anxiety, POTS, nausea) and PEM.
In context ↗ - At worst: Mild
The head pressure, weak muscles, lack of energy to do basic stuff etc.
In context ↗ - Now: Near normal
Mostly recovered from other symptoms but left with this worsened anxiety.
In context ↗ - Began after: COVID
COVID made it 300% intensity “physical anxiety”
Read from 19 of their posts and comments; links to the 10 this page draws on
Summary
Zephyr 71862, 27, developed long COVID with dysautonomia, panic attacks, POTS, nausea, brain fog and PEM. Low-dose propranolol and guanfacine eased adrenaline dumps and improved focus; a four-month course of sofosbuvir/velpatasvir (Epclusa) was followed by improvement, though they could not be sure the drug did it. By mid-2023 most symptoms had improved, leaving anxiety; a low-dose beta blocker and keto diet made the most significant difference. The antiviral was expensive.
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What they tried
What they credit
Their words about each treatment
- propranolol (beta blocker) · Helped
beta blocker (low-dose) and keto diet ... made the most significant difference
In context ↗ - Guanfacine · Helped
Guanfacine definitely helped my ability to focus and more importantly reduced my adrenaline dumps.
In context ↗ - Sofosbuvir/Velpatasvir (Epclusa) · Helped a lot
Yes I’m definitely a lot more functional than before sofos. It’s around the 1.5 week mark that I noticed the most improvement.
In context ↗ - omega-3 · Not said
Sofo and omega-3 are the only things I’m taking.
In context ↗ - Remdesivir (Veklury) · Not said
I take it with dinner and usually feel really sleepy by 10.
In context ↗
Approaches: Antivirals · Beta-blockers · Diet
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | Long COVID with dysautonomia, panic, POTS, nausea, brain fog and PEMMy main symptoms are dysautonomia (adrenaline dumps, panic attacks, anxiety, POTS, nausea) and PEM.In context ↗ | Mild | |
| 2023-03-12 | Better focus and fewer adrenaline dumps on guanfacineGuanfacine definitely helped my ability to focus and more importantly reduced my adrenaline dumps.In context ↗ | Mild | Guanfacine |
| 2023-05-06 | More functional after sofosbuvir/velpatasvir; brain fog, POTS, palpitations and sleep betterI’m definitely a lot more functional than before sofos.In context ↗ | Mild | Sofosbuvir (Sovaldi, Harvoni, Epclusa) |
| 2023-07-25 | Mostly recovered from other symptoms, anxiety remainsMostly recovered from other symptoms but left with this worsened anxiety.In context ↗ | Near normal | Propranolol (Inderal) |
| — | Relapsed in the pastHaving relapsed in the past, I’m cautiously optimistic!In context ↗ | Not stated | |
| 2023-10-31 | Life goals and career partly on hold, still anxiousI had to put some of my life goals/career on hold a bit because of this new reality.In context ↗ | Near normal |
Adverse events
- Guanfacine“But I definitely still have bad days and side effects (drowsiness, dry mouth etc) are pretty real.” In context ↗ Side effects
- Sofosbuvir (Sovaldi, Harvoni, Epclusa), Remdesivir (Veklury)“I take it with dinner and usually feel really sleepy by 10.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My main symptoms are dysautonomia (adrenaline dumps, panic attacks, anxiety, POTS, nausea) and PEM.
In context ↗ - Brain fog
1) Brain fog -> Ability to focus and get stuff done at work
In context ↗ - POTS & dysautonomia
POTS and palpitations still happen but rarely.
In context ↗ - Heart symptoms & palpitations
Random palpitations and POTS were gone
In context ↗ - Gut problems
Less frequent nausea, dizziness, and depersonalization
In context ↗ - Anxiety & low mood
Mostly recovered from other symptoms but left with this worsened anxiety.
In context ↗ - Neuropathy & tingling
just stuck in fight or flight with debilitating anxiety, neuropathy and PEM
In context ↗ - Headaches & migraine
The head pressure, weak muscles, lack of energy to do basic stuff etc.
In context ↗ - Sleep problems
my sleep and mental clarity have been great. I wake up feeling refreshed
In context ↗
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