Post-COVID heart-rate spikes and PEM, somewhat better with neuro meds and speech therapy
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2023
In their words
- Condition: Long COVID
I walked out with a post Covid 19 cardiac complications diagnosis.
In context ↗ - At worst: Severe
I’d collapse as soon as I got home. Could barely - and I truly mean barely - take care of myself.
In context ↗ - Now: Somewhat better
I’m much better than I was but I still have to decide between - and plan - minor activities that would have been energetically (and pain-level) trivial before
In context ↗ - Began after: COVID
Once I’d mostly “recovered“ from the initial infection (which took me months/pre-existing lung condition)
In context ↗
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Moon 33508 became ill with COVID-19. After months recovering, brief activity left them collapsing with orthostatic heart-rate spikes; a cardiologist diagnosed post-COVID cardiac complications. A neuro medication eased muscle fatigue, speech therapy helped vocal cord dysfunction, and electrolytes helped POTS-like symptoms. They were much better but still limited to a small energy envelope, with 1-5 minutes of activity able to trigger PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- LMNT electrolytes · Helped
I dilute one sachet to approx. 750ml of water 2x/day and it helps my POTS-like symptoms immensely.
In context ↗ - staying within the energy envelope · Helped
if I stay within my small energy envelope, I’m relatively stable compared to last year or even earlier this year
In context ↗ - asthma inhalers · No change
after my cough failed to respond to asthma inhalers or oral steroids
In context ↗ - Topamax · Much worse
I had a horrible reaction to Topamax
In context ↗ - mestinon · Helped
It’s helped me a lot with muscle fatigue, and I’m pretty sure that I was perceiving severe muscle fatigue (from minor, minor tasks) as pain so overall a notable improvement.
In context ↗ - respiratory retraining with a speech language pathologist · Helped
I’m starting respiratory retraining with a speech language pathologist.
In context ↗
Approaches: POTS medication · Pacing
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 |
|---|---|---|---|
| onset | COVID-19 infection in the first waveOnce I’d mostly “recovered“ from the initial infection (which took me months/pre-existing lung condition)In context ↗ | Not stated | |
| — | Collapsed after brief dog walks; could barely care for selfI’d collapse as soon as I got home. Could barely - and I truly mean barely - take care of myself.In context ↗ | Severe | |
| 2022-12-23 | Much better but still limited to a small energy envelopeI’m much better than I was but I still have to decide between - and plan - minor activitiesIn context ↗ | Moderate | Salt, electrolytes and fluids |
| 2023-01-06 | Mestinon eased muscle fatigue from small tasksIt’s helped me a lot with muscle fatigue ... overall a notable improvementIn context ↗ | Moderate | Mestinon / pyridostigmine |
| 2023-10-04 | Speech therapy for vocal cord dysfunction helpedHelped me quite a bit.In context ↗ | Moderate |
Adverse events
- Topiramate (Topamax)“I had a horrible reaction to Topamax (mentioned in another reply), a medication which helps many people.” In context ↗ Side effects
- “I found some of the exercises difficult and surprisingly tiring.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
But 1-5 minutes of activity can cause PEM
In context ↗ - POTS & dysautonomia
Managing - to the extent that I can - the POTS like symptoms has helped
In context ↗ - Heart symptoms & palpitations
my heart rate would skyrocket
In context ↗ - Muscle weakness
It’s helped me a lot with muscle fatigue
In context ↗ - Pain & fibromyalgia
Typing this is physically painful (hand/wrist/arm pain)
In context ↗ - Breathlessness
shortness of breath
In context ↗ - Temperature regulation
For me it’s neck, hands, and feet.
In context ↗
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