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 group.

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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No but ive haf chronic diarrhea and pain rt side sincr Covid in Janusry lots of tedts no no answers either lidt 17 lbs Hope u get some help

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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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@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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Hang in there and please share if you find ways to improve life; I have very similar issues!

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@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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Thank you for responding, I do have days that are worse than others in regard to fatigue. My sleep has greatly been effected, I may sleep 3-5 hours a night and not restful. Covid has kick started a new dx finding I am bipolar 2 with psychosis. There are days that my body feel almost normal, yet the word finding, speech and unstable thinking does not usually change. I have started a new Rx with the hope it will help my unstable mood/thinking.

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For purposes of comparison, Did the long-haulers often have "break through" cases or were they unprotected by vaccinations?

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@mavolyn

For purposes of comparison, Did the long-haulers often have "break through" cases or were they unprotected by vaccinations?

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My daughter had Covid in very early days – no vaccine, and is still working through neurological issues. My "extra" daughter was vaccinated, and is very slowly coming out of a breakthrough case, but has underlying Neuro issues from a brain injury that got worse. No lung or other organs affected though.
Others I know with breakthrough cases have not had long Covid unless they were hospitalized.
Sue

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@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 believe there is litigation on the workers comp issue, especially for front-line medical workers who became ill before vaccines were available.
My daughter found herself in the same situation, but the fatigue has mostly lifted, and her words come more easily now, after 20 months. Her employer accommodated her with a 4 hour per day telehealth postiton, but even that was a big stretch some days. She has progressed and will be resuming OR duties, where the pace is more manageable the urban ER.
Sue

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Yes! I have had intense anxiety and depression, dizziness, ear ringing since having covid in Sept. Have you found help?

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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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@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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Hola yo vivo lo mismo día a día tengo un año y cuatro meses en esta condición. Lo que sé es porque aprendí a escuchar mi cuerpo a trabajar hasta el límite de mi tolerancia sin esfuerzo a intentar realizar cualquier actividad pero dejar que el cuerpo me diga ya no puedo más. No es fácil existe mucha frustración, trate de conservar mi trabajo hasta que me di cuenta que no iva a poder realizar ese trabajo ni otro, me han visto muchos médicos, me han realizado muchos estudios, muchos tratamiento, y ninguno sin resultado lo último que me hicieron fue un cateterismo de las arterias coronarias afortunadamente como todos los demás estudios salió todo bien, pero mi condición persiste y estoy cansada de visitar tantos médicos sin respuesta a lo que siento simplemente me di cuenta qué hay enfermedades que no se pueden respaldar con una prueba de sangre o un estudio específico que cada persona es diferente y en el caso de COVID persisten se deben tratar así no hay un patrón una medida o un protocolo para conseguir un diagnóstico o un tratamiento simplemente está y nos afecta nuestra vida a diario. ( yo intenté también participar en la clínica mayo pero no aceptaban mi seguro y es básicamente todo lo que e hecho en este largo periodo de mi padecimiento ) un día a la vez y ahorrando toda la energía para realizar actividades específicas. Mucha suerte y paciencia.

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@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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Seems like you should seek/interview a new PCP? From what I read and hear, me are just more interested in post covid conditions and think it would be important for that person to be an advocate and invested in getting yiu headed in the right direction…?.

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