1. < Post-COVID Recovery & COVID-19

Do other long haulers suffer with brain changes? Seen any improvement?

Posted by mindig @mindig, Oct 28, 2021

Hi there,
I am new to the site and have been recommended by my Dr to reach out. I had covid19 in November, I still struggle with fatigue, body aches, shortness of breath, racing heart and cognitive brain changes which have turned my world upside down. Does any one suffer with brain changes? and have you seen improvement over time?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

jrg200911 | @jrg200911 | Dec 8, 2021
In reply to @sarahstueven "Not that incident specifically but definitely similar. I will try to put cupboard foods back in..." + (show)
@sarahstueven

Not that incident specifically but definitely similar. I will try to put cupboard foods back in the fridge or strange things like that. I've forgotten to send a house payment, I forgot to mail my state taxes in. Do you find sometimes things are worse like cyclical as well?

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As with all my Longhaul symptoms, I never know what’s going to take top billing on any given day. The brainfog has been fairly consistent, though. My typical process is forgetting something as quickly as I remember it multiple times before all the stars are aligned perfectly for me to accomplish the deed in the moment I remember it - if that makes any sense. If there are too many steps needed to get something done, the task becomes overwhelming and is set aside. I have also found even when I have completed something and thought I had completed it well in detail and accuracy, I come across it later to find I had missed something important. I can’t believe it’s December. I’m already overwhelmed with the thought of having to tackle taxes again…

To help with timely bill paying I have set as much of my regular bills as possible up on online autopay from one credit card. That way I basically have one bill to pay monthly (the credit card) while all the monthlies are paid on time throughout the month. It does take discipline, but for that system to work, the credit card must be paid in full each month… Go Green! No paper bills, no check writing, and no snail mail for bill paying for me. USPS delivery is even more delayed now. You practically have to pay bills a month in advance to have them received by the deadline - and that’s only if you can remember!

Also, many years ago I set up email reminders for monthly/quarterly/annual bills and leave the reminder starred and in my Inbox until I have completed the task. (At least that was already in place long before COVID hit!)

I’m just learning to adjust to my new limitations.

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mycovid | @mycovid | Dec 8, 2021
In reply to @sarahstueven "I have been a long hauler now for something like 19 or 20 months. I unfortunately..." + (show)
@sarahstueven

I have been a long hauler now for something like 19 or 20 months. I unfortunately still struggle with brain changes. At this stage I feel like the worst brain changes are cyclical so I think there is more to it like when I'm stressed or not sleeping good enough or don't have enough time to relax. My worst issues are short term memory issues and word recall, also for some reason when I am driving at times for a moment things don't look familiar or I forget how to get where I'm going. I went through the cognitive testing and everything there was fine. Basically, they just recommended getting enough good sleep, meditation, exercise, eating healthy, reducing stress, laughing more, finding time to relax, etc. Good luck to you.

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I had Covid in January for most of the month. Finding myself with the same long term affects as you, along with anxiety and panic attacks, most likely due to a lack of understanding of these long term issues. I joind this group and find comfort in not being alone. Buspirone helps with the anxiety as I wait for these long-term symptoms to subsided. I wish I had more to offer than " you are not alone."
My hope is there will be relief soon.

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1 reply
sarahstueven | @sarahstueven | Dec 9, 2021
In reply to @mycovid "I had Covid in January for most of the month. Finding myself with the same long..." + (show)
@mycovid

I had Covid in January for most of the month. Finding myself with the same long term affects as you, along with anxiety and panic attacks, most likely due to a lack of understanding of these long term issues. I joind this group and find comfort in not being alone. Buspirone helps with the anxiety as I wait for these long-term symptoms to subsided. I wish I had more to offer than " you are not alone."
My hope is there will be relief soon.

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"You are not alone" goes a long way.

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lynnryan | @lynnryan | Dec 10, 2021

You definitely aren’t alone. I had Covid March 2020, and am still dealing with neurological symptoms, being unable to work for the past 17 months. I was diagnosed at Mayo in January as having “Post Covid Syndrome’, or Long Haulers. My neurologist said my symptoms present as if I have had a concussion. If you look up “Post Concussion Sydrome”, you will find many similar, if not identical symptoms.

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1 reply
hawaii17 | @hawaii17 | Dec 10, 2021
In reply to @rinadbq "I have a lot of cognitive issues. I had a 4 hr. evaluation with a Neuro-Physch..." + (show)
@rinadbq

I have a lot of cognitive issues. I had a 4 hr. evaluation with a Neuro-Physch Dr which pin pointed where my issues are--delayed word finding, memory, recall, sequencing. I am working with a speech therapist which really helps. I keep a notebook log...on one page I write down what I am doing, hour by hour, and on the facing page what kind of symptoms/issues I have through the day like memory, spelling, sleep problems, extreme lethargy, terrible headaches, getting lost while driving a familiar route, hot & cold flashes. staying on task, word finding, body/head pain, dizziness, balance, shortness of breath at rest and/or with exertion, fast heart rate & what that rate is, emotional swings-anger, fear, depression, isolation, feeling overwhelmed. I limit my thinking work (planning my day, balancing check book, making appointments) to 2 hours a day and my physical work (doing housework, walking, garden, cooking) to 2 hours a day. This has been a tremendous step in warding off days of incapacitating exhaustion where I 'crash' and am basically MIA in my own life. I too became ill in November. I am (was) a frontline working-ER Nurse and got sick at work. I lost my job and work comp withdrew their coverage.

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Very similar but still employed thank goodness🤞. For me, I did not know I had COVID until I had 2months of symptoms.. HEADACHES All-day/Fatigue/Cognitive/Depression/Brain Fig/Muscle-joint pain/Vision, balance, etc. I’ve had PostLyme which presents identical symptoms (but hard to get care)…which makes sense as it’s a pathogen as well. So I thought the Lyme was back in full force (or I was over stressed with move/new-job, etc). I finally went to see my internist and within 10 minutes told me I most likely had Long Covid… did the antibody test, and sure enough, it was positive! So at least now I know and the medical community is taking this much more seriously than Lyme🙏 I am very concerned with my new job though as I am lacking concentration, have impaired cognitive abilities, and can not focus or complete tasks I used to be able to do with my eyes closed:-(. I have heard Long Covid is recognized as a Disability but as an RN you absolutely should be covered under Workman’s Comp! Can you pursued disability or other legal recourse. (Although it is hard to do anything because of symptoms, much less deal with the legal world.). I am hoping to get away with my work deficiencies for now but I too may have to consider disability if my symptoms do not improve drastically in the next month. If anyone knows if Long COVID is an approved DX for Disability coverage, please let me know:-)

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1 reply
hawaii17 | @hawaii17 | Dec 10, 2021
In reply to @lynnryan "You definitely aren’t alone. I had Covid March 2020, and am still dealing with neurological symptoms,..." + (show)
@lynnryan

You definitely aren’t alone. I had Covid March 2020, and am still dealing with neurological symptoms, being unable to work for the past 17 months. I was diagnosed at Mayo in January as having “Post Covid Syndrome’, or Long Haulers. My neurologist said my symptoms present as if I have had a concussion. If you look up “Post Concussion Sydrome”, you will find many similar, if not identical symptoms.

Jump to this post

I’m so sorry you’ve had these symptoms for over 17 months! Does Mayo treat for Long COVID? Are you eligible for disability benefits? I’m considering that route if my symptoms don’t improve in the next month as my symptoms are really making my job difficult… then I get exhausted from the stress and frustration not being able to perform at peak. ✌️🌻

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2 replies
RMS | @rinadbq | Dec 10, 2021
In reply to @hawaii17 "Very similar but still employed thank goodness🤞. For me, I did not know I had COVID..." + (show)
@hawaii17

Very similar but still employed thank goodness🤞. For me, I did not know I had COVID until I had 2months of symptoms.. HEADACHES All-day/Fatigue/Cognitive/Depression/Brain Fig/Muscle-joint pain/Vision, balance, etc. I’ve had PostLyme which presents identical symptoms (but hard to get care)…which makes sense as it’s a pathogen as well. So I thought the Lyme was back in full force (or I was over stressed with move/new-job, etc). I finally went to see my internist and within 10 minutes told me I most likely had Long Covid… did the antibody test, and sure enough, it was positive! So at least now I know and the medical community is taking this much more seriously than Lyme🙏 I am very concerned with my new job though as I am lacking concentration, have impaired cognitive abilities, and can not focus or complete tasks I used to be able to do with my eyes closed:-(. I have heard Long Covid is recognized as a Disability but as an RN you absolutely should be covered under Workman’s Comp! Can you pursued disability or other legal recourse. (Although it is hard to do anything because of symptoms, much less deal with the legal world.). I am hoping to get away with my work deficiencies for now but I too may have to consider disability if my symptoms do not improve drastically in the next month. If anyone knows if Long COVID is an approved DX for Disability coverage, please let me know:-)

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Long Covid is approved for Disability coverage.

REPLY
lynnryan | @lynnryan | Dec 11, 2021
In reply to @hawaii17 "I’m so sorry you’ve had these symptoms for over 17 months! Does Mayo treat for Long..." + (show)
@hawaii17

I’m so sorry you’ve had these symptoms for over 17 months! Does Mayo treat for Long COVID? Are you eligible for disability benefits? I’m considering that route if my symptoms don’t improve in the next month as my symptoms are really making my job difficult… then I get exhausted from the stress and frustration not being able to perform at peak. ✌️🌻

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Luckily through my job, i had short, then long term disability. They did have me apply for Social Security disability, but I was denied. They say everyone gets denied the first time. I have an attorney helping me appeal it. Also, when I was attending the Pain Rehab clinic at Mayo, the long term disability company called out of the blue and said they determined I’m not disabled anymore and quit paying me that day. My family did research on the company, Unum, and they are notorious for declining people with valid claims. There is a class action law suit against them, so now I have a different attorney helping me there. They make you feel like a deadbeat trying to work the system, when I would love nothing more than to feel better and be able to go back to work. This certainly is not a life anyone would pick.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2021
In reply to @skinner "I read where people have much more sever problems than I having covid. One thing I..." + (show)
@skinner

I read where people have much more sever problems than I having covid. One thing I just barely see is the use of exercise to help in recovery. Is physical exercise just assumed as part of you'al recovery plan? I do physical exercise and it seems to help me.

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@skinner, experts from the post-COVID recovery team at Mayo Clinic suggest that tailored physical activity helps with recover. Exercise is good, but it needs to be tailored to you. Do what you enjoy and as much as feels right for you. Here are some suggestions for a gentle start:
- Post-COVID Self Care https://connect.mayoclinic.org/blog/post-covid-recovery/tab/self-care/#ch-tab-navigation

You might wish to start a new discussion about exercise and post-COVID recovery. Or join this one:
- Anxious about Walking with post-COVID https://connect.mayoclinic.org/discussion/anxious-about-walking/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2021
In reply to @hawaii17 "I’m so sorry you’ve had these symptoms for over 17 months! Does Mayo treat for Long..." + (show)
@hawaii17

I’m so sorry you’ve had these symptoms for over 17 months! Does Mayo treat for Long COVID? Are you eligible for disability benefits? I’m considering that route if my symptoms don’t improve in the next month as my symptoms are really making my job difficult… then I get exhausted from the stress and frustration not being able to perform at peak. ✌️🌻

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Yes, hawaii, Mayo treats long COVID. Read more here:
- Post-COVID Care at Mayo Clinic https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/#ch-tab-navigation

And learn more from others who have been there:
- What to expect at Mayo Clinic's Post COVID Treatment Program? https://connect.mayoclinic.org/discussion/post-covid-treatment-program/

How long have you been dealing with long COVID?

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