1. < Post-COVID Recovery & COVID-19

What helps post COVID shortness of breath?

Posted by kcstokes @kcstokes, Jul 17, 2021

Hydrochlaquid: Spelling is iffy at best. I wonder if this drug would provide relief from post COVID shortness of breath?

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giguilar | @giguilar | Jan 16, 2022

I would like to know. At this point I've been told I will be having oxygen 24/7 for my life remaining.

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2 replies
Lucy | @welchllb | Jan 17, 2022
In reply to @welchllb "Thank you for your suggestions. I did go to the blog and got some good information..." + (show)
@welchllb

Thank you for your suggestions. I did go to the blog and got some good information to share with my PCP. I do try to plan my days based on "have to dos" and "want to dos". My caring husband obnoxiously reminds me when I'm doing too much.

I was just referred to a therapist to explore Vagus Nerve Stimulation for Long Covid. Apparently, it's done in Canada with some success. Have you heard anything about it? Currently, I am suffering from lower back pain which is making my exercise routine more than a little difficult. Nothing is easy these days but I remain hopeful!! Thanks, Lucy

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Have you heard of Vagus Nerve Stimulation for Long Covid?

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1 reply
doodleslb | @doodleslb | Jan 17, 2022
In reply to @welchllb "Pulmonary rehab did not work. I could go through the routine with good oxygen and HR..." + (show)
@welchllb

Pulmonary rehab did not work. I could go through the routine with good oxygen and HR but later that day or the next I would have a breathing episode. The following is an excerpt from my COVID journal which is now 37 pages long.

I don't look sick - bags under my eyes only occur when I push myself, so most people have a hard time knowing I'm sick. My husband is really the only one who understands my disability. Getting dressed, walking to the mailbox, taking a shower, climbing stairs, getting pans out of cupboards, doing laundry, walking from the car to a restaurant result in windedness and legs that feel like they're going to collapse - like I've run a marathon. If I push myself after becoming winded and do not rest, I end up with scary shortness of breath, blurry vision, dizziness, major brain fog, headaches, feel like my heart is racing but it's not. Pre-Covid, I participated in Aerobic dancing 3 days a week, walked 5-6 miles 2x per week, gardened for hours, played golf, and more. Now, I can't go to a big grocery store - too much effort. (I went once with my husband and he had to walk me to the car in the middle of shopping.)

You are the first person in all my research and doctor visits who has asked me to describe my "episodes". Thank you!!!

Incidentally, I am on a waiting list for the University of MI Post-Covid Clinic. I hope to get an appointment in May. No, I hope I do not have to go by May. Mayo is not taking new post-Covid patients either......long waiting list.

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I have the same issues. Gone to u of m. Not much help. They figure it’s mental issues.

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1 reply
Lucy | @welchllb | Jan 18, 2022
In reply to @doodleslb "I have the same issues. Gone to u of m. Not much help. They figure it’s..." + (show)
@doodleslb

I have the same issues. Gone to u of m. Not much help. They figure it’s mental issues.

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Very disappointing!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 20, 2022
In reply to @welchllb "Have you heard of Vagus Nerve Stimulation for Long Covid?" + (show)
@welchllb

Have you heard of Vagus Nerve Stimulation for Long Covid?

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I had not heard of Vagus Nerve Stimulation for long COVID recovery. I looked it up. It appears VNS is in clinical trials as an adjunct therapy in COVID-19 patients suffering from Acute Respiratory Distress Syndrome (ARDS) and respiratory dysfunction in an acute setting, not necessarily for long COVID.
https://pubmed.ncbi.nlm.nih.gov/34026778/

Do have references for its use for long COVID?

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2 replies
Lucy | @welchllb | Jan 21, 2022
In reply to @colleenyoung "I had not heard of Vagus Nerve Stimulation for long COVID recovery. I looked it up...." + (show)
@colleenyoung

I had not heard of Vagus Nerve Stimulation for long COVID recovery. I looked it up. It appears VNS is in clinical trials as an adjunct therapy in COVID-19 patients suffering from Acute Respiratory Distress Syndrome (ARDS) and respiratory dysfunction in an acute setting, not necessarily for long COVID.
https://pubmed.ncbi.nlm.nih.gov/34026778/

Do have references for its use for long COVID?

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https://www.dolphinmps.com/dolphin-vagal-nerve-stimulation-for-covid19-2/
This is the website the Therapist sent me. I would appreciate your feedback. Thank you.

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2 replies
lolaemma | @lolaemma | Jan 21, 2022
In reply to @welchllb "I am new to this discussion. I contracted a serious case of COVID + pneumonia in..." + (show)
@welchllb

I am new to this discussion. I contracted a serious case of COVID + pneumonia in August 2020. I was not hospitalized but went to the ER three times. I continue to have pretty major bouts of breathlessness, dizziness, brain fog, weak legs, etc. I have been seen by 2 Pulmonologists and a Cardiologist plus, my PCP. No answers. I have done Pulmonary Rehab, do my own yoga and try stationary bike. I am as active as I can be without causing an episode. Any comments?
Thank you.

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Hi Lucy, you too? Its been since Early 2020 I was in assisted/ nursing for about eight weeks. No memory of time. The fog started to lift in July. The heaviness in my chest started to ease but high humidity has revved it up again. Reminding myself to lean back while sitting and breathe deeply is reassuring to me. I'm in North Carolina and the attitudes are about the same. Currently receiving physical therapy at home. My recovery has been so !ong it's frustrating. I'm in a wheelchair and working with a walker. Why aren't there post covid clinics? There are so many of us? Stressful to the max! Have an appointment with a pulmonary clinic for October28th. The urgent care clinic took two visits to identify a sinus infection recently. Not positive for Covid dunno what's wrong. Frustrating. Since I survived Covid pneumonia I'm just kicking and screaming but won't give up. Don't let it take your hope away. We will survive.

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2 replies
Lucy | @welchllb | Jan 22, 2022
In reply to @lolaemma "Hi Lucy, you too? Its been since Early 2020 I was in assisted/ nursing for about..." + (show)
@lolaemma

Hi Lucy, you too? Its been since Early 2020 I was in assisted/ nursing for about eight weeks. No memory of time. The fog started to lift in July. The heaviness in my chest started to ease but high humidity has revved it up again. Reminding myself to lean back while sitting and breathe deeply is reassuring to me. I'm in North Carolina and the attitudes are about the same. Currently receiving physical therapy at home. My recovery has been so !ong it's frustrating. I'm in a wheelchair and working with a walker. Why aren't there post covid clinics? There are so many of us? Stressful to the max! Have an appointment with a pulmonary clinic for October28th. The urgent care clinic took two visits to identify a sinus infection recently. Not positive for Covid dunno what's wrong. Frustrating. Since I survived Covid pneumonia I'm just kicking and screaming but won't give up. Don't let it take your hope away. We will survive.

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I'm so sorry. The stresses of your life are much worse than mine. I agree, there are so many of us and the resources are so few. Waiting lists of a year for the few long COVID patients. My biggest frustration is having a few good days, feeling hopeful and then, crashing again. Take care of yourself and try reading good books - takes you away from you. I've found it helpful along with deep breathing and trying to stay on a schedule.

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Lucy | @welchllb | Jan 22, 2022
In reply to @colleenyoung "I had not heard of Vagus Nerve Stimulation for long COVID recovery. I looked it up...." + (show)
@colleenyoung

I had not heard of Vagus Nerve Stimulation for long COVID recovery. I looked it up. It appears VNS is in clinical trials as an adjunct therapy in COVID-19 patients suffering from Acute Respiratory Distress Syndrome (ARDS) and respiratory dysfunction in an acute setting, not necessarily for long COVID.
https://pubmed.ncbi.nlm.nih.gov/34026778/

Do have references for its use for long COVID?

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Colleen, do you know whether there would be any value to publishing my COVID journal? If so, where? Thanks, Lucy

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2022
In reply to @giguilar "I would like to know. At this point I've been told I will be having oxygen..." + (show)
@giguilar

I would like to know. At this point I've been told I will be having oxygen 24/7 for my life remaining.

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Welcome, @giguilar. Can you share a bit more about yourself? Did you have COVID and are now dealing with long-term respiratory issues? Did you have lung issues before COVID?

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