Long COVID breathlessness, vertigo for 14 months; close to normal after exercise and rest
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 14 months
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I'm tempted to call myself a former long hauler but I want to give it a few more weeks/months and get back to 100%.
In context ↗ - At worst: Mild
I somehow manage to get my kids to school and go to work, which I really shouldn't have done
In context ↗ - Now: Near normal
I'm still not 100% but I think I'm close to it.
In context ↗ - Began after: COVID
I got covid mid-October 2022.
Read from 15 of their posts and comments; links to the 10 this page draws on
Summary
For about 14 months after a mild COVID infection in mid-October 2022, they had long COVID with breathlessness, exercise intolerance, panic attacks, tinnitus and vertigo. A gradual exercise routine and rest brought them close to normal by spring 2023, though severe insomnia was already present; a sleep study diagnosed idiopathic hypersomnia. Modafinil made sleep harder, Xywav didn't help, and taking both caused dizziness; trazodone helped by December 2023, though sleep remained imperfect. They spent about $300 on supplements.
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What they tried
What they credit
Also tried
Their words about each treatment
- quitting sugar, coffee, chocolate and tea · Not said
I quit chocolate entirely, which I loved. Not even eating sugar in any form
In context ↗ - yoga · Helped
I do about 10 minutes of yoga. It feels good but I definitely feel tired a few hours later.
In context ↗ - montelukast · Helped
I've been on it for 20 plus years. I haven't experienced many side effects, in fact it helps with my allergies sometimes.
In context ↗ - albuterol inhaler · Helped
What has helped: Using my albuterol inhaler, claritin.
In context ↗ - benedryl · Not said
I've been trying benedryl which I'm still on the fence about.
In context ↗ - vitamin E · Not said
Lots of vitamins and I don't know if they do anything. (Vitamin E, Quercitin, Vitamin C, Magnesium)
In context ↗ - physical therapy exercises · Not said
During all of this, I would do my physical therapy exercises, which I never had a problem with.
In context ↗ - graded exercise (walking, building up minutes) · Helped a lot
I think at least for me, exercise, even pushing it a little, worked, although there was a price to pay
In context ↗ - spoon theory / saving energy, listening to the body · Helped
It has helped me when I realized that I needed to save spoons for later, so to speak, or when I was all out of spoons/energy.
In context ↗ - Epley Maneuver · Not said
I don't know if that helped in the long run but I would do it in the morning when it was pretty bad - maybe it helped?
In context ↗ - meditating and breathing exercises · Helped
I'm meditating. I'm doing breathing exercises.
In context ↗ - journaling · Not said
And then journaling in attempts to destress.
In context ↗ - modafanil · Worse
It made me really focused but it stressed my body out and made it difficult to sleep. I didn't like it.
In context ↗ - xywav · Worse
I started the xywav last week. It's funky, I thought it would help. It didn't.
In context ↗ - trazodone · Helped
Now I'm on trazodone. Its not perfect but it does the job.
In context ↗
Approaches: H1 antihistamines · Other drugs and medicines · Pacing
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-October 2022 | COVID infection and start of long COVIDI got covid mid-October 2022. ... Covid was mild - I had a few bad days.In context ↗ | Mild | |
| late October 2022 | exercise intolerance after early return to exerciseI started to exercise and my body was telling me "no". ... that evening or the next day I'd get shortness of breath.In context ↗ | Mild | |
| 2023-03-15 | energy back to normal with 30 minutes of exercise, but not 100%I'm now at 30 min and my energy levels are I think back to normal.In context ↗ | Near normal | Graded exercise therapy (GET) |
| summer 2023 | sleep deteriorationThen I'm struggling to sleep through the night.In context ↗ | Mild | |
| late August 2023 | severe insomnia, weight loss, dizziness from sleep medicationsIn the last two weeks I think I've lost 10 pounds. My body is stressed. ... I'm surprised I can work and string words together.In context ↗ | Mild | |
| 2023-09-02 | burning arms/chest and sleep improved after ClaritinIn the hour the claritin hits, all that goes away. ... I got sleep, people!In context ↗ | Mild | |
| 2023-12-09 | sleep improved on trazodone, though not perfectNow I'm on trazodone. Its not perfect but it does the job.In context ↗ | Near normal | Trazodone (Desyrel) |
Adverse events
- Graded exercise therapy (GET)“When I did exercise, my body felt overly stressed and I struggled to sleep.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“It made me really focused but it stressed my body out and made it difficult to sleep. I didn't like it.” In context ↗ Side effects
- Sodium oxybate (Xyrem, Xywav)“The xywav made me feel really tired and shakey” In context ↗ Side effects
- Modafinil / armodafinil“then when I take the modafanil, then I'm not focusing, I'm dizzy, really shouldn't be operating heavy machinery” In context ↗ Side effects
- Sodium oxybate (Xyrem, Xywav), Modafinil / armodafinil“They wanted me tonup the dose and I was too groggy. That combined with the modafanil was just crazy making.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
When I did exercise, my body felt overly stressed and I struggled to sleep. ... that evening or the next day I'd get shortness of breath.
In context ↗ - Sleep problems
Now I'm on trazodone. Its not perfect but it does the job.
In context ↗ - Breathlessness
that evening or the next day I'd get shortness of breath.
In context ↗ - Tinnitus
I still have tinnitus and vertigo.
In context ↗ - Anxiety & low mood
I haven't had one of those intense panic attacks in a while.
In context ↗ - Gut problems
I have long term GI issues
In context ↗ - Loss of smell or taste
my taste and smell came and went but it was more or less there.
In context ↗ - Neuropathy & tingling
my arms and chest feel like they are on fire. Not fire fire, but like a medium burn.
In context ↗ - Brain fog
I'm surprised I can work and string words together.
In context ↗
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