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

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.

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?

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...?.

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?

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?

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.

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.

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

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?

@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?