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.

@rinadbq

Speech Therapy is wonderful for compensating techniques

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Speech helped my daughter post-Covid, they are still working with her to restore her reading comprehension, which she also lost (in March 2020.)
Sue

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I had a bad case of Covid in 12/2020. I continue with brain fog, use oxygen at bedtime with CPAP (a previous diagnosis of sleep apnea), insomnia (take a nightly prescription sleep aid), numb arms upon waking about 1-2 times a week, racing heart with light exercise. Almost a year later and I feel like my brain fog issues are having a resurge. They never completely went away, but I'm noticing a resurgence and it is concerning me. I work as a nurse and I do not do well with multi-tasking or over stimulation and have decided to go from 36 hrs a week to 24 hrs. Looking to see what others are doing.

I take Doxepin for sleep (tri-cyclic antidepressant used more for sleep than depression). I tried using CBD Sleep gummies (1/2 gummy) and it worked for a few months but then stopped. I went back to Doxepin.
My employer has changed my work duties so I concentrate on 1-2 services that require less multi-tasking. I am so appreciative of them working with me during this time of frustration, for me.

Kim

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@kpatterson

I had a bad case of Covid in 12/2020. I continue with brain fog, use oxygen at bedtime with CPAP (a previous diagnosis of sleep apnea), insomnia (take a nightly prescription sleep aid), numb arms upon waking about 1-2 times a week, racing heart with light exercise. Almost a year later and I feel like my brain fog issues are having a resurge. They never completely went away, but I'm noticing a resurgence and it is concerning me. I work as a nurse and I do not do well with multi-tasking or over stimulation and have decided to go from 36 hrs a week to 24 hrs. Looking to see what others are doing.

I take Doxepin for sleep (tri-cyclic antidepressant used more for sleep than depression). I tried using CBD Sleep gummies (1/2 gummy) and it worked for a few months but then stopped. I went back to Doxepin.
My employer has changed my work duties so I concentrate on 1-2 services that require less multi-tasking. I am so appreciative of them working with me during this time of frustration, for me.

Kim

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It is great you are able to work. I am over a year now and have not seen a lot of changes. Multitasking is very difficult, especially with noise around me. As an ER nurse it is impossible to go back. I had 'near misses' doing 4 hr shifts at a vaccine clinic which scared me and I stopped. I rely on a quiet environment for normal household paperwork that I can do slowly and triple check. Knowing that I am not reliable is a profound hit to me self esteem. In my BC (before Covid) life I ran codes, trauma, rapid transfusions, Cath lab, stroke/TPA without a second thought-I was fully 'in the zone'. my mojo is gone now

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@jloudon @sandeen @kpatterson @rinadbq, you all mentioned the challenges of multi-tasking. I'm sure many in this group can relate. What was once something you wouldn't have given a second thought about now requires more focus than your brain can give.

Rina, what you said about "my mojo" being gone really hit me hard. When multitasking is our norm, not being able to robs us of our identity. How do you mourn that loss, move to acceptance and adopt new approaches of which you are equally proud?

The interesting thing is that we're actually wired to be monotaskers, meaning that our brains can only focus on one task at a time. Have any of you found that COVID has forced you to be a better monotasker?

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@colleenyoung

@jloudon @sandeen @kpatterson @rinadbq, you all mentioned the challenges of multi-tasking. I'm sure many in this group can relate. What was once something you wouldn't have given a second thought about now requires more focus than your brain can give.

Rina, what you said about "my mojo" being gone really hit me hard. When multitasking is our norm, not being able to robs us of our identity. How do you mourn that loss, move to acceptance and adopt new approaches of which you are equally proud?

The interesting thing is that we're actually wired to be monotaskers, meaning that our brains can only focus on one task at a time. Have any of you found that COVID has forced you to be a better monotasker?

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My identity has taken a HUGE hit; who am I when I am not an ER RN, runner, gardener, traveler, weight lifter, 'Martha Stewart' entertainer????? I participate in a COVID Resilience zoom support group in addition to individual emotional counseling. There is a lot of grief for the abilities I have lost and I am learning to be thankful for the abilities I have. Somehow, I think there should be cheerleaders around me all the time for going up a flight of stairs without stopping, finding-joining-going to a community Rec Center and taking a yoga class (much of which I couldn't do, but I did show up and I found similar equipment I use for PT in the gym). I think I earned a gold medal! Why doesn't anyone else see what a super-star I am?
I am truly living 'one step at a time'. post it notes are invaluable. I do much better when I have only one folder on my desk at a time, clutter is confusing!

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@colleenyoung @rinadbq. Yo antes podía hace muchas tareas a la vez, ahora solo puedo hacer una y con periodos de descanso muy largos. Esto me impide regresar a mi trabajo y han pasado un año y seis meses. Aunque e aprendido a conocer mi cuerpo y saber mis límites todavía veo muchos médicos escépticos con respecto al síndrome post COVID, y créanme que e estado con muchos especialistas en diferentes áreas y rehabilitación cardiopulmonar y rehabilitación física. Sin ningún resultado solo con la esperanza de que todo pase

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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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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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@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’m 15 months in and my cognitive issues are very similar to yours. Have you ever toasted air because you forgot to actually put the bread in the toaster before pressing the lever? I often miss steps or get confused during food prep…

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@jrg200911

I’m 15 months in and my cognitive issues are very similar to yours. Have you ever toasted air because you forgot to actually put the bread in the toaster before pressing the lever? I often miss steps or get confused during food prep…

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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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