Long COVID headaches, vertigo and brain fog, now about 75% and back at work after clinic
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 8 months
- Last post
- May 2022
In their words
- Condition: Long COVID
I got fired for having long haul Covid.
In context ↗ - At worst: Moderate
before I couldn’t sleep more than an hour or two ... No more fainting spells. I can drive again safely which before was impossible.
In context ↗ - Now: Much better
I’m 14 months out now and I’m slowly getting better and the anxiety is lessening each month.
In context ↗ - Began after: COVID
I got Covid from work, because they didn’t enforce mask wearing
In context ↗
Read from 29 of their posts and comments; links to the 23 this page draws on
Summary
After catching COVID at work in late 2020, she struggled for about a year with chronic headaches, vertigo, joint pain and brain fog; early on she had fainting spells and was unable to drive, and some days could walk only to the end of her driveway. A Vanderbilt long-haul clinic, migraine and vertigo drugs, walks and time brought her to about 75% and back to full-time work, though migraines returned almost daily. She was fired and paid thousands in medical bills.
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What they tried
What they credit
Also tried
Their words about each treatment
- Meclazine · Helped a lot
Meclazine helped me tremendously with the vertigo. ... My vertigo has almost completely disappeared with it.
In context ↗ - 0.25 dose medication · Worse
I take 0.25 and I’m out like a light for 14 hours. ... It also makes my vertigo even worse
In context ↗ - Propranolol · Helped
Propranolol has been a godsend at least for the headaches. It hasn’t helped with my chest pain/ arrhythmia much though
In context ↗ - Xanax · Helped
My doctor put me on Xanax. Helps a ton.
In context ↗ - physical therapy · Helped
physical therapy for the vertigo, a medication for the vertigo ... It’s helped tremendously so far.
In context ↗ - gabapentin · Helped
gabapentin for the pain and for the sleep issues ... It’s helped tremendously so far.
In context ↗ - topamax · Helped
going as far as a beta blocker, a calcium channel blocker, topamax, abortive medication for onset and also Aimovig injections. It worked for awhile about 6 months and now I’m back to almost daily migraines again.
In context ↗ - calcium channel blocker · Helped
a calcium channel blocker, topamax, abortive medication for onset and also Aimovig injections. It worked for awhile about 6 months and now I’m back to almost daily migraines again.
In context ↗ - Aimovig · Helped
Aimovig injections. It worked for awhile about 6 months and now I’m back to almost daily migraines again.
In context ↗ - Maxalt · Helped
I had to get a prescription migraine medicine called Maxalt, it’s the only thing I’ve found that works
In context ↗ - Elavil · Helped
Elavil works almost too good. I’m not having trouble sleeping now but I’m having trouble wanting to get up.
In context ↗ - Claratin and Zyrtec · Helped
I literally survive on Claratin in the AM, Zyrtec and Singular (prescribed) and Flonase at night.
In context ↗ - Singular · Helped
Zyrtec and Singular (prescribed) and Flonase at night. My allergies are terrible so if I don’t do this I’m going to have to go back on allergy shots.
In context ↗ - Flonase · Helped
Have you tried adding Flonase? I literally survive on Claratin in the AM, Zyrtec and Singular (prescribed) and Flonase at night.
In context ↗ - walking · Helped
One thing that has helped me was to go for a walk, even if I was exhausted and hurting. ... helped build my endurance and strength back up.
In context ↗ - water · Helped
I drink a gallon a day now and I can’t tell you how much it has helped my cognitive process, the fatigue and headaches.
In context ↗ - diet modification · Helped
It’s been ok with diet modification. ... I can’t eat spicy foods (which I love), I can’t eat high fat foods
- fasting all day · Helped
I fasted all day yesterday, had some oatmeal this morning and the pain went away then tried some salad at lunch and now I hate myself for it.
In context ↗ - chicken soup and oatmeal · Helped
I felt better in about 5 days by chicken soup and oatmeal
In context ↗ - ashwegandha root · Helped
Have you tried ashwegandha root? It’s been super helpful for me.
In context ↗ - Genteal eye gel · Helped
I used Genteal eye gel or ointment whatever one I grabbed, it’s for severe dry eyes. It worked great
In context ↗ - Vitamin C gummies · Helped
Vitamin C gummies are amazing!
In context ↗
Approaches: H1 antihistamines · POTS medication · Benzodiazepines · Exercise and activity · Other drugs and medicines · Physiotherapy and rehab
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. The chart starts 2 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| onset | caught COVID at workI got Covid from work, because they didn’t enforce mask wearingIn context ↗ | Not stated |
| 2021-02 | fainting spells, vertigo, could not drive, crippling joint pain; could only walk to the end of the drivewaysome days it was just to the end of my driveway and back to my house ... Even the short walks I took when I was at my worst helped build my endurance and strength back upIn context ↗ | Moderate |
| 2021-02-23 | sleeping better, vertigo and headaches easing, able to drive again after seeing specialistsI’m doing so much better after seeing both a cardiologist and a neurologistIn context ↗ | Mild |
| 2021-06-17 | symptoms came back after a mid-April improvement, linked to acute pancreatitisseemed to get better around mid April and then out of nowhere it hit me againIn context ↗ | Mild |
| 2021-10-02 | about 75% of her former self, walking the dog half a mileI’m 10 months into my journey and I’m about 75% of what I used to beIn context ↗ | Mild |
| 2021-11-16 | back to work full timenow at 11 months in I’m back at work full time, albeit a little more run down than usualIn context ↗ | Mild |
| 2022-02-02 | chronic migraines returned, almost dailynow I’m back to almost daily migraines againIn context ↗ | Moderate |
| 2022-04-06 | back at work full time with long-haul clinic careHe got me back to work full timeIn context ↗ | Mild |
Adverse events
- “I take 0.25 and I’m out like a light for 14 hours. No way I can do more than that. It also makes my vertigo even worse” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“Elavil works almost too good. I’m not having trouble sleeping now but I’m having trouble wanting to get up. I’ve slept through my alarm more times than I care to admit” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
now I’m back to almost daily migraines again
In context ↗ - POTS & dysautonomia
I would get up for sitting down to go to the bathroom and hit the floor I was so dizzy
In context ↗ - Heart symptoms & palpitations
It hasn’t helped with my chest pain/ arrhythmia much though
In context ↗ - Sleep problems
before I couldn’t sleep more than an hour or two
In context ↗ - Brain fog
feeling like my head was underwater not being able to think clearly
In context ↗ - Anxiety & low mood
With long haul Covid I became a paranoid mess.
In context ↗ - Pain & fibromyalgia
crippling pain in my joints
In context ↗ - Gut problems
I have to be super careful about everything I eat.
In context ↗ - Breathlessness
I can’t walk more than a few feet without feeling like I’m suffocating
In context ↗
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