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.

RMS | @rinadbq | Nov 28, 2021
In reply to @liciarogers "I too have similar issues ! I’m on new supplements but no improvement yet." + (show)
@liciarogers

I too have similar issues ! I’m on new supplements but no improvement yet.

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what supplements?

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1 reply
liciarogers | @liciarogers | Nov 28, 2021
In reply to @rinadbq "what supplements?" + (show)
@rinadbq

what supplements?

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A naturopath who evaluated me recommeded a mushroom complex, Vitamin D, B12, olive leaf, monolaurin lysine, adrenal support, and a probiotic at night.

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zthinker69 | @zthinker69 | Nov 28, 2021
In reply to @djwinchell "I was very sick with COVID all of January and part of February, before vaccines were..." + (show)
@djwinchell

I was very sick with COVID all of January and part of February, before vaccines were available in my area. I still have bouts of not being able to catch my breath, word loss of even the most common words, loss and/or distorted taste and smell—bacon and prosciutto taste like salted plastic. A skunk and brewing coffee smell the same. Salad greens, which I love, taste and smell rotted, no matter how fresh. Most things I cannot smell, or the smell doesn’t match the item. Loss of hearing in one ear. The cognitive disruption is the worse part though. I’m finding it difficult to want to engage in conversations with other people. I’m afraid I’ll lose my train of thought or won’t be able to “find” a word to complete a sentence. Embarrassing.

I’ve not found any help. I tell my PCP and don’t get any direction. What is available to help?

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Wow! I’m not the only one -
Skunk, coffee, bleach, Lysol, lavender and all the happens in the bathroom all smell the same. Going on 20 months.
MRI’s, scope in nose - no diagnosis. Courage! 0:-)

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 30, 2021
In reply to @zthinker69 "Wow! I’m not the only one - Skunk, coffee, bleach, Lysol, lavender and all the happens..." + (show)
@zthinker69

Wow! I’m not the only one -
Skunk, coffee, bleach, Lysol, lavender and all the happens in the bathroom all smell the same. Going on 20 months.
MRI’s, scope in nose - no diagnosis. Courage! 0:-)

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Hi @zthinker69, welcome.
You may be interested in this related discussion:
- Lost Smell and Taste after COVID https://connect.mayoclinic.org/discussion/smell-and-taste/

Are you dealing with any other lingering symptoms post-COVID?

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1 reply
zthinker69 | @zthinker69 | Dec 1, 2021
In reply to @colleenyoung "Hi @zthinker69, welcome. You may be interested in this related discussion: - Lost Smell and Taste..." + (show)
@colleenyoung

Hi @zthinker69, welcome.
You may be interested in this related discussion:
- Lost Smell and Taste after COVID https://connect.mayoclinic.org/discussion/smell-and-taste/

Are you dealing with any other lingering symptoms post-COVID?

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Thank you.
And yes, a few symptoms I’m aware of and remember (I think) - fatigue. It’s like trying to hold a chin-up some days to stay awake. Regular sleep of 8-9 hours keeps it down though.
- focus. Again to stay present it’s like the holding the chin-up.
- white LED lights take my focus quicker and then lead to a headache in a spot I’ve never had one before.
… will finish later. Thank you

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snickersthenurse | @sandeen | Dec 2, 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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I also am an RN, working with child and adolescent psych outpatient. I experience daily brain fog, difficulty with focus and recall. I experience with retaining information, finding myself writing EVERYHING down. So far, employer is very helpful and understanding. I have developed a significant murmur, rapid and irregular heart rhythm. I am getting a heart monitor today, failed pulmonary testing, and scheduled for a CT if the lungs next week. Hang in there. We will get through this,

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1 reply
lindadian1948 | @lindadian1948 | Dec 2, 2021
In reply to @colleenyoung "Hi @mindig, welcome. @debberanner also talks about cognitive issues in this discussion - Post Covid Brain..." + (show)
@colleenyoung

Hi @mindig, welcome. @debberanner also talks about cognitive issues in this discussion
- Post Covid Brain Issues https://connect.mayoclinic.org/discussion/post-covid-brain-issues/

I'm tagging fellow members @ldropps @saraguev @jwatzig @antonsc @lweed1956 @kcartier and @lauriekh to bring them into this discussion as they have talked about brain issues related to post-COVID recovery.

Mindi, you have a lot going on. Fatigue alone can really play havoc on cognitive function. Do you find some days are better than others? Is your cognitive function worse on the days/times that your other symptoms are bad? How's your sleep?

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I ended having a MRI of my brain and it showed my brain is shrinking. Nothing can be done about it. I also have a problem with my balance, I use a cane because I will fall. I got Covid-19 from the hospital, I a TEE done at the cath lab and 3 days later I had COVID-19. So if you loose words it will get better. God Bless You All

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RMS | @rinadbq | Dec 3, 2021
In reply to @sandeen "I also am an RN, working with child and adolescent psych outpatient. I experience daily brain..." + (show)
@sandeen

I also am an RN, working with child and adolescent psych outpatient. I experience daily brain fog, difficulty with focus and recall. I experience with retaining information, finding myself writing EVERYHING down. So far, employer is very helpful and understanding. I have developed a significant murmur, rapid and irregular heart rhythm. I am getting a heart monitor today, failed pulmonary testing, and scheduled for a CT if the lungs next week. Hang in there. We will get through this,

Jump to this post

Speech Therapy is wonderful for compensating techniques

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1 reply
jloudon | @jloudon | Dec 3, 2021

I have had covid fog since covid nov 6 2020. I’m now just getting into Neuro psych for testing over 12 hours so far . I hope to get help with my memory snd multitasking. I’m still working in the health care field but it’s a huge struggle

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jennifergillan03 | @jennifergillan03 | Dec 3, 2021

I did after a course of steroids.

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