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.

@bunzman

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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There is a whole new specialty being formed in medicine- the care of people with long Covid. These programs include people in cardiology, pulmonology, neurology, psychology, PT and OT among others. Look for a program near you, or can look to Mayo or a teaching hospital near you. Most PCP's don't have the time or experience to deal with the complex symptoms of long Covid. Sorry, I'm typing on my phone and don't have a link available for you, but you can find them in this discussion.
Sue

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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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It sounds like sinus issues. I had Covid at the same time as you and although I could still breath through my nose, I had blockages and polyps. Polyps cause the strange smells. I have problems with an onion smell. I would suggest going to an ENT so they can look inside your nose.

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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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Hi @lynn1954 @djwinchell and others seeking professionals specializing in post-COVID recovery.
Survivor Corps https://www.survivorcorps.com/ is an excellent resource to help you find a clinic and/or physician close to you. There is a wealth of information as well.

@luisa22 Survivor Corps also has Spanish information available https://www.survivorcorps.com/espanol

I also encourage to follow the Mayo expert blog for tips, the latest research and more
– Post-COVID Recovery https://connect.mayoclinic.org/blog/post-covid-recovery/

If getting care at Mayo Clinic is an option for you, read more about our COVID clinics here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

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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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Your story is identical to mine. Praying for healing and answers. Just want our life back. It feels like my brain has forgotten how to do tell my body what to do. If I add anything to the Autonomic System functions like walking, housework or anything requiring processing, my physical symptoms return.

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@tschumpers5

Your story is identical to mine. Praying for healing and answers. Just want our life back. It feels like my brain has forgotten how to do tell my body what to do. If I add anything to the Autonomic System functions like walking, housework or anything requiring processing, my physical symptoms return.

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I am sorry you are in such a difficult situation after having Covid-19. There are so many that are experiencing prolonged and unusual symptoms after the virus – can you tell us how long ago you were infected, whether you were treated with monoclonal antibodies, or were hospitalized and whether you also continue to have respiratory or cardiac symptoms?
There is getting to be a larger body of knowledge, and more therapeutic options, but these can be difficult to find or access, depending on where you are located.
Sue

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@sueinmn

There is a whole new specialty being formed in medicine- the care of people with long Covid. These programs include people in cardiology, pulmonology, neurology, psychology, PT and OT among others. Look for a program near you, or can look to Mayo or a teaching hospital near you. Most PCP's don't have the time or experience to deal with the complex symptoms of long Covid. Sorry, I'm typing on my phone and don't have a link available for you, but you can find them in this discussion.
Sue

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I had a severe case of covid a year ago. It took me about 3-4 mos to feel normal again. I have not had any real long haul covid symptoms that I’m aware of as I have other health issues that have some of the same symptoms. However, this past week, I have had definite long haul symptoms that I know are from covid. Last Sunday I started having shortness of breath, palpitations and no energy. I’m so tired I can hardly do anything. After a few stairs, I’m exhausted. I haven’t notified my dr as I’m not sure there is anything he would do. If it continues much longer, I will contact him. Has anyone else had a situation similar to this after this long of time?

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@banksnc49

I had a severe case of covid a year ago. It took me about 3-4 mos to feel normal again. I have not had any real long haul covid symptoms that I’m aware of as I have other health issues that have some of the same symptoms. However, this past week, I have had definite long haul symptoms that I know are from covid. Last Sunday I started having shortness of breath, palpitations and no energy. I’m so tired I can hardly do anything. After a few stairs, I’m exhausted. I haven’t notified my dr as I’m not sure there is anything he would do. If it continues much longer, I will contact him. Has anyone else had a situation similar to this after this long of time?

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@banksnc49 – Good morning. I think that we are so used to hearing about long COVID and l Covid symptoms that we neglect that there can be other things that can bother us too! I agree that you shouldn't wait too long before contacting your doctor to discuss this.

Have you been tested since the symptoms have re-appeared?

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@merpreb

@banksnc49 – Good morning. I think that we are so used to hearing about long COVID and l Covid symptoms that we neglect that there can be other things that can bother us too! I agree that you shouldn't wait too long before contacting your doctor to discuss this.

Have you been tested since the symptoms have re-appeared?

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I have not. If it continues into next week I will get tested.

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@banksnc49

I have not. If it continues into next week I will get tested.

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Let us know!

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I too was sick all of January, before vaccine was available, and suffer the same anxiety and cognitive issues. Buspirone helps with the anxiety but I wonder how long these sympyoms will last and if there is an effort to understand the long term affects of this virus.

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@mycovid

I too was sick all of January, before vaccine was available, and suffer the same anxiety and cognitive issues. Buspirone helps with the anxiety but I wonder how long these sympyoms will last and if there is an effort to understand the long term affects of this virus.

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Hi @mycovid, sorry that you too are dealing with long-haul COVID. Yes, clinicians and researchers are studying long term effects of the virus. You may be interested in following Mayo’s expert blog on the topic here:
– Post-COVID Recovery https://connect.mayoclinic.org/blog/post-covid-recovery/

Have you considered going to a post-COVID recovery specialty clinic?

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