How did you do with Covid?

[outofadream]

For those of you who already had dysautonomia before the pandemic started, I’m really curious about your experiences with Covid. Did you mostly recover or did it lead to a longer flare/relapse or new issues?  

[Pistol]

Hello @outofadream - I had COVID last fall and did very badly. I ended up having to be admitted to the hospital with COVID pneumonia and respiratory failure and recovered well from that. But after the first week at home I developed an inflammatory condition called vasculitis that also affected my ankles. I could not stand or walk b/c my ankles were so swollen and painful, and then developed a bad rash on my legs. I ended up going to the rheumatologist and they treated it with steroids but then found that I also had sepsis from an infected infusion port ( for IV fluids for HPOTS ) and admitted me again. It's been nine months and I am doing good but am still not back to my pre-health scare normal. 

[MikeO]

Two of my nurses started losing hair with the early version of Covid. Can't remember the name for that but was related to the fever.  

[MTRJ75]

It frustrated me so much when people dismiss this as being like the flu. There's not enough education on the havoc this infection reaps on the vascular system in the brain, lungs, heart that could can quite possibly be long term. And now this thing is mutating so quickly that I've been reading vaccine updates are already outdated when the come out. 

[JennKay]

@outofadream -- I had covid19 in January 2022, so presumably one of the first omicron strains. I had 2 Pfizer vax doses, was not boosted, and had not previously been infected. My main symptoms were increased PVCs, much higher resting pulse, fatigue, and fever. They were most intense for the first 24 hrs of fever, then decreased after that. I did run a low fever for about 7 days, around 99F. I generally felt the same after covid19 as I did before, but it did take a couple weeks to get back to my previous "normal" level. Weirdly, I tested positive for covid19 again (by PCR) in March 2022 and was hospitalized at that time b/c my QTc was prolonged to a dangerous level (over 500ms). My QTc corrected with IV magnesium and potassium, but neither level was below normal when I went to the ER - however, they were both on the low end of normal. The internist said I was PCR positive b/c of my January infection, but I believe I had a second infection. I asked my EP what he thought of the incident and he couldn't definitively say if my QTc issue was covid19 related or not. Who knows! I have since started propranolol for my ectopics, mainly PVCs, which come and go. I take 10mg at night and this has helped a lot with my sleep. I still wake multiple times a night, sometimes with my pulse elevated, but I can usually get back to sleep again with the propranolol. 

I am suspicious we (me and my family) may be infected again with omicron ba5. We all have some viral something or another and my pulse was elevated a good portion of yesterday afternoon, similar to when I was infected in January and March, and I've been very fatgiued with a low fever today. Here's to hoping it passes quickly since we've already had omicron previously. I don't know how it can be avoided at this point, especially if you have young kids. I think the infectivity of ba5 is like twice that of the measles...

[Pistol]

@JennKay - wishing you and your family a quick recovery! Hugs!

[JennKay]

@Pistol -- thanks for the love ❤️ 

We got our PCR results back and we are all negative. But, my husband and I are pretty certain we all have covid19, just that our immune systems are responding appropriately, which makes us feel so crappy. I'm still running a low fever today, around 99.5F. My symptoms today are the fever and palpitations. Darn those freaking palpitations!! 

[outofadream]

@Pistol I’m so sorry you went through all of that, especially back to back like that! I’m really glad you pulled through, and I definitely hope that recovery does continue for you. 
 

@DysautonmiaMatt I’m sorry you’re caught in the cycle of repeated flare ups, I know that’s incredibly frustrating. I get what you mean too about never knowing quite where it’s coming from, whether it’s an after effect of Covid or something else. I just hope it does level out for you.

@MTRJ75 I hear you. I feel like those of us with dysautonomia understand better than most how significant those kind of long term complications can be, since we do live with so many difficult symptoms all the time. I agree that awareness is really important and I’ve shared that frustration, for what it’s worth.

@JennKayI hope you feel better really soon! I know fevers can be terrible for hr and palpitations. I’m sorry you went through so much with Covid already, and that must have been a tough time dealing with the prolonged qtc in March. Again, sending care and hopes for relief for you soon. 

[Jason_X]

I did pretty well.

• Male in my mid 50s. Slightly overweight. Taking Lisinopril for mild high blood pressure. Some kidney damage from taking PPIs in the past (to address GERD because of gastroparesis)
• Infected in early July 2022, so likely the BA.5 strain. 
• Three Pfizer vaccines, with the most recent on in December 2021.
• I never had a fever.
• Symptoms:  Stuffy head. Mild cough. Fatigue that started a few days after the initial symptoms. The fatigue lasted 1-2 weeks and faded gradually.
• I was concerned about heart symptoms because I have inappropriate sinus tachycardia, but it wasn't a problem.

[angelloz]

I had Covid in February. A mild case.  Was vaccinated and boosted. Now here in July I am having more autonomic issues than I have had in many years. Low BP, without the tachycardia as in the past. Severe head and neck pain.Frequent nausea. I am 63. Don’t know if I can fight my way to better days again. My last problems began at menopause around age 50. Low blood volume was a major issue so lots of salts and fluids. After years I was so much better. I don’t know if Covid has caused this or something else. 

[Ana]

I know this is an old post but I wanted to share.

I had always felt dizzy when I stood up and my vision would darken but I would not ever pass out, this started in my teens. In 2020 I got COVID before I had any vaccines. I was fine until I wasn't. I had no symptoms at all for the first 4 days. Then I felt my heart racing and heart palpitations, which I had had palpitations before, but not the heart racing sensation. I communicated this to my NP and she said to monitor my HR. If I stood up and walked, just 5-6 steps, it would go from 80s (resting) all the way up to 130s-160s almost immediately. I could not go up the stairs without feeling faint so I was not allowed to go upstairs at all. Other than that, no symptoms. No cough, no sinus anything, no fever, no GI issues, nothing at all. At about the 2 week mark, I woke up one day feeling my chest tight. NP said to go to the ER just in case, I was diagnosed with pneumonia. HR kept being an issue and the palpitations. I was not allowed back to work since I couldn't stand for very long and my HR remained high for as long as I was standing. I went to see a cardiologist, she diagnosed me with POTS and told me that they had seen an increase in diagnoses of patients post-COVID. She said that in my case, it sounded like I already had POTS but a very mild form and COVID exacerbated my symptoms to where they became a problem. I wore a cardiac monitor for a week and we realized I had an arrythmia, the palpitations I was so used to feeling and my sudden bursts of anxiety were all the arrythmia, PACs. I started taking salt pills twice a day, electrolytes and compression socks, as well as flecainide for the arrythmia. I saw her again 6 months later and I had significantly improved so she said I could stop the salt pills and monitor symptoms. I stopped the compression socks because I hated them and noticed I was still doing fine. I kept the electrolytes for another year and since then I take them every so often, especially if I am having a flare or I can feel that it's gonna be a day. But since COVID my POTS is definitely worse than it was.

Two months ago, I got COVID for the second time. I was worried about having a POTS flare, but to my surprise I didn't. I again had no symptoms except for being tired. My HR did increase a bit when standing but nothing like the first time around. So round two of covid seems like I won this time around.

[JennKay]

@Ana -- just curious, are you still using the flecainide? Was wondering if you were able to stop it once your symptoms inproved.

[Ana]

@JennKay Technically yes. I stopped it because my husband and I want to try for a baby later in the year and the cardiologist said I had to stop it before that, however, I technically still need it. I have more heart palpitations without it.

[brethor9]

Oddly enough my body behaved itself more with Omicron and I can't for the live of me figure out why. On the other hand I just got ove a bad respiratory virus and it kicked my a**. Menopause has crashed me harder than any virus put together however.