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

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?

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

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.

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

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.

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

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

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

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