Long COVID at 10% of normal, improved then relapsed house-ridden; credits time
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 months
- Last post
- Dec 2023
In their words
- Condition: Long COVID
Got infected in January and started dealing with LC symptoms in February.
In context ↗ - At worst: Moderate
At the 1-2 month mark I was just like you, heart rate jumping to 160 getting dressed, could barely walk without feeling like I was going to pass out
In context ↗ - Now: Relapsed
The POTS and orthostatic hypotension makes life borderline unliveable
In context ↗ - Began after: COVID
Then in late December/early January I caught COVID with a relatively mild illness
Read from 29 of their posts and comments; links to the 22 this page draws on
Summary
Dew 58653, 28, developed long COVID after a mild January 2023 infection. At 1–2 months his heart rate hit 160 on dressing and he could barely walk without near-fainting; at 1 month he felt at 10% of normal. He improved to 65% by month 5 and could walk 30 minutes by month 7, crediting time; gluten-free diet resolved diarrhea and Wellbutrin improved motivation. He then relapsed: at 10 months POTS/orthostatic hypotension left him house-ridden, unable to stand more than about 3 minutes without risking fainting, with fleeting suicidal thoughts. Phlebotomies gave only 1–2 days of relief.
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What they tried
What they credit
Also tried
Their words about each treatment
- propranolol · Helped
Beta blockers have been a godsend for me, propranolol in particular.
In context ↗ - GI cocktail · No change
gave me a GI cocktail. But it didn’t really seem to help a ton.
In context ↗ - H1 blockers / Benadryl · No change
I’ve tried ibuprofen, antihistamines, and Ativan. Nothing has really worked.
In context ↗ - famotidine · No change
Been popping H1 and H2 blockers every night
In context ↗ - tramadol · Helped a lot
Not only has it reduced my pain but it’s also helped tremendously with my body chills and fatigue
In context ↗ - PPI · No change
Docs seem to think it’s GERD however anti-GERD medication has not helped
In context ↗ - fludrocortisone · No change
On fludrocortisone but it doesn’t help a ton.
In context ↗ - phlebotomy (blood donation) · Helped
I feel insanely better the day I get a phlebotomy and the day or two after.
In context ↗ - Ativan / benzos · Helped
Benzos also help my symptoms
In context ↗ - gluten-free diet · Helped
I recently went gluten-free and my stomach pain and chronic diarrhea resolved almost immediately afterwards.
In context ↗ - Fluvoxamine, Lexapro, Trintellix, Wellbutrin · Helped
They havent helped with LC symptoms but they do help big time with anxiety which helped out a lot.
In context ↗ - Zyn pouches (nicotine) · Worse
I've been an on/off user of Zyn pouches during my LC experience and they've made my LC worse.
In context ↗ - Pfizer COVID vaccine · No change
I got the new Pfizer vaccine which didn’t give me any side effects but didn’t really change much of my LC .
In context ↗ - therapy / therapist · Not said
My therapist acts like it’s mostly my anxiety
In context ↗ - time · Helped
However slowly but surely, things got better.
In context ↗
Approaches: Beta-blockers
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| February 2023 | long COVID symptoms began after COVIDGot infected in January and started dealing with LC symptoms in February.In context ↗ | |
| March 2023 (1–2 months in) | lowest point: about 10% of normal, wrote willAt the 1-2 month mark I was just like you, heart rate jumping to 160 getting dressed, could barely walk without feeling like I was going to pass outIn context ↗ | |
| 2023-05-06 | setback after a few better days and datesI was doing pretty good these past few days, even went on a few dates. Then I woke up this morning feeling like garbage.In context ↗ | |
| 2023-06-24 | about 65% recovered by month 5I’m on month 5 now and I’m about 65% recoveredIn context ↗ | Time and spontaneous remission |
| 2023-07-19 | big flare after a period of improvementThought I was getting better but having another big flare up this week and feeling demoralizedIn context ↗ | |
| 2023-08-06 | orthostatic hypotension became the main debilitating symptom6 months in to LC and some symptoms have improved but orthostatic hypotension continues to debilitate me.In context ↗ | |
| 2023-10-02 | able to walk 30 minutes with heart rate 110–120Recently I’ve been able to walk for 30 minutes maintaining a heart rate of 110-120.In context ↗ | Time and spontaneous remission |
| 2023-10-21 | gluten-free diet resolved chronic diarrhea and reduced stomach pain/palpitationsI recently went gluten-free and my stomach pain and chronic diarrhea resolved almost immediately afterwards.In context ↗ | Gluten-free diet |
| 2023-11-17 | Wellbutrin improved motivation and activityI recently started Wellbutrin though and wow, what a game-changer.In context ↗ | |
| 2023-12-04 | POTS/orthostatic hypotension relapse, house-riddenThe POTS and orthostatic hypotension makes life borderline unliveable. I’m 10 months in.In context ↗ |
Adverse events
- Fluvoxamine (Luvox), Escitalopram (Lexapro)“Eventually stopped them due to sexual side effects (some ED and anorgasmia.) These cleared up after stopping them.” In context ↗ Side effects
- Vortioxetine (Trintellix)“It definitely makes anorgasmia and ED worse however its hard to tell how much of the ED is from the Trintellix” In context ↗ Side effects
- Nicotine patches“they’ve made my LC worse ... my LC heart palpitations/POTS/exercise intolerance is much worse when Im using nicotine (like my standing/walking heart rate is 20-30 bpm faster when im using nicotine)” In context ↗ Made symptoms worse
- Nicotine patches“anytime I get a little bit of stress my brain immediately goes into craving mode and I get a huge urge to drive and get a couple cans of Zyn pouches.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I recently got out and did more walking and exertion last weekend than I have in months, I’ve been crashing hard this week in response
In context ↗ - Brain fog
Body chills, feverish feeling, abdominal pain, brain fog.
In context ↗ - POTS & dysautonomia
The POTS and orthostatic hypotension makes life borderline unliveable.
In context ↗ - Pain & fibromyalgia
body pains and aches
In context ↗ - Headaches & migraine
crushing head pressure
In context ↗ - Gut problems
A gluten-free diet resolved my years-long chronic diarrhea almost instantaneously.
In context ↗ - Heart symptoms & palpitations
Heart rate goes from 60bpm to 120-130 bpm with standing.
In context ↗ - Neuropathy & tingling
my feet started tingling
In context ↗ - Anxiety & low mood
Some days I get fleeting thoughts of suicide.
In context ↗ - Flu-like symptoms
Body chills, feverish feeling
In context ↗
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