1. < Post-COVID Recovery & COVID-19

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.

longcovidhell | @longcovidhell | Apr 20, 2022
In reply to @babsg1 "I am new to this group. I read your comments and I cried. Finally I found..." + (show)
@babsg1

I am new to this group. I read your comments and I cried. Finally I found someone like me. I know it sounds horrific yet I have dealt with brain fog, hair loss, headaches, and severe sleep issues since I was hospitalized with Covid last October 2021 with two vaccinations. During my hospital stay the doctors kept telling me I was so fortunate cause I had “break through” Covid and the vaccinations kept me from dying. Now 6 months later I feel like dying. It was 2:00am when I got up. This 1:00-3:00am slot is the worst. No one understands. No doctors understand.

Jump to this post

My husband is in the same situation as you two. It has been over 2 years since he got COVID and he is tired of hurting & being unable to function. I keep telling him to stay positive that eventually there will be a breakthrough, but he is giving up. I am so worried and don't know what to do.

REPLY
1 reply
babsg1 | @babsg1 | Apr 20, 2022
In reply to @longcovidhell "My husband is in the same situation as you two. It has been over 2 years..." + (show)
@longcovidhell

My husband is in the same situation as you two. It has been over 2 years since he got COVID and he is tired of hurting & being unable to function. I keep telling him to stay positive that eventually there will be a breakthrough, but he is giving up. I am so worried and don't know what to do.

Jump to this post

I do not know the answers nor do our doctors. Thank you for replying to my comments. My heart goes out to you and your husband. I think trying to remain positive is all we can do right now. I know doctors and scientists are realizing the after effects of Covid and will find a helpful solution for us.

REPLY
jar | @jar | Apr 21, 2022
In reply to @tee68 "@babsh1. It is awful what we are both going through some people think it is all..." + (show)
@tee68

@babsh1. It is awful what we are both going through some people think it is all in your head, the doctors have know comprehension because they are not going what we are going through. I am just trying to find a reason why some days I am good and some days I am not . It is a toss of the coin how I wake up. If I wake up good one day I say to myself I have beat this but then the sob breath comes back or another sleeplessness night. The sleeplessness is the killer we can’t function without sleep, then the pressure in my head the headaches, this is not me or you. We can’t ever give up I have faith that we will get better, how long it will take I don’t know. I am with you during your sleepless nights I am with you during your depressed days where we lose hope. We are separate people yet we are one that we are both going through the same thing. If you ever need to talk to me speak to me in private I am here. I will give you my email address. Don’t ever give up my friend.

Jump to this post

I'm new on this site! To read some of these posts makes me feel like when will this end! Had covid the end of May 2021 that was the second time. Terrific headaches, muscle and hair loss, memory loss, lack of sleep, dizziness and focusing on things is what I'm struggling with. The Internal doctor that I was sent to after having covid told me that I was a long hauler from covid! Seeing an ENT, had CT scan and MRI on Monday. Just wanted to make sure there isn't something else going on. Praying for everyone that is going through this!

REPLY
2 replies
pkpeterson | @pkpeterson | Apr 21, 2022
In reply to @jar "I'm new on this site! To read some of these posts makes me feel like when..." + (show)
@jar

I'm new on this site! To read some of these posts makes me feel like when will this end! Had covid the end of May 2021 that was the second time. Terrific headaches, muscle and hair loss, memory loss, lack of sleep, dizziness and focusing on things is what I'm struggling with. The Internal doctor that I was sent to after having covid told me that I was a long hauler from covid! Seeing an ENT, had CT scan and MRI on Monday. Just wanted to make sure there isn't something else going on. Praying for everyone that is going through this!

Jump to this post

I had Covid December 2021. The horrible headaches, horrible tinnitus, hair loss, brain fog and chills are more than I can take. I’ve had MRIs and a CT, and nothing. It feels so hopeless. 😞

REPLY
jd44204 | @jd44204 | Apr 21, 2022

Had Covid-19’s in November 21. So I also work in high stress job. When I went back it was brutal. Ended up on FMLA for six months with a reduced schedule slowly working my way back to normal. When I don’t do anything extra I am ok now with just some fatigue and shortness of breath. But when I got sick recently the fatigue and brain fog are back. Frustrating! Back to slowing things down and letting it rebuild.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @jar "I'm new on this site! To read some of these posts makes me feel like when..." + (show)
@jar

I'm new on this site! To read some of these posts makes me feel like when will this end! Had covid the end of May 2021 that was the second time. Terrific headaches, muscle and hair loss, memory loss, lack of sleep, dizziness and focusing on things is what I'm struggling with. The Internal doctor that I was sent to after having covid told me that I was a long hauler from covid! Seeing an ENT, had CT scan and MRI on Monday. Just wanted to make sure there isn't something else going on. Praying for everyone that is going through this!

Jump to this post

@jar @pkpeterson @jd44204, I know long COVID can leave you feeling hopeless. Recovery is so slow. But there is hope and understanding.

I encourage you to follow this blog written by Mayo Clinic Long COVID experts:
- Post-COVID Recovery https://connect.mayoclinic.org/blog/post-covid-recovery/

Drs Van, Ganesh and others share observations they see at Mayo Clinic's Post COVID Care Clinics and offer tips. For example, see these posts:
- Early Care Tips for COVID Longhaulers https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/early-care-tips-for-covid-longhaulers/
- Physical Therapy and Occupational Therapy Guidance for Post-COVID Syndrome (PCS) https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/physical-therapy-and-occupational-therapy-guidance-for-post-covid-syndrome-pcs/
- Cognitive Changes and Post-COVID https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/cognitive-changes-and-post-covid/

What do you find helps you compensate and manage the cognitive changes?

REPLY
1 reply
longcovidhell | @longcovidhell | Apr 25, 2022
In reply to @colleenyoung "@jar @pkpeterson @jd44204, I know long COVID can leave you feeling hopeless. Recovery is so slow...." + (show)
@colleenyoung

@jar @pkpeterson @jd44204, I know long COVID can leave you feeling hopeless. Recovery is so slow. But there is hope and understanding.

I encourage you to follow this blog written by Mayo Clinic Long COVID experts:
- Post-COVID Recovery https://connect.mayoclinic.org/blog/post-covid-recovery/

Drs Van, Ganesh and others share observations they see at Mayo Clinic's Post COVID Care Clinics and offer tips. For example, see these posts:
- Early Care Tips for COVID Longhaulers https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/early-care-tips-for-covid-longhaulers/
- Physical Therapy and Occupational Therapy Guidance for Post-COVID Syndrome (PCS) https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/physical-therapy-and-occupational-therapy-guidance-for-post-covid-syndrome-pcs/
- Cognitive Changes and Post-COVID https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/cognitive-changes-and-post-covid/

What do you find helps you compensate and manage the cognitive changes?

Jump to this post

Thanks Colleen, I will look through this information for my husband, who got COVID in March 2020 and continues to suffer with constant migraine, tinnitus. dizziness. brain fog, poor sleep, and joint aches & muscle weakness.

REPLY
cavera | @cavera | May 14, 2022
In reply to @mavolyn "For purposes of comparison, Did the long-haulers often have "break through" cases or were they unprotected..." + (show)
@mavolyn

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

Jump to this post

I was vaccinated with J&J in March 2021, had antibody testing showing I had antibodies in August then got Covid late September 2021 (during the Delta surge and before the CDC recommendation updated to get a second shot after 2 months). I got the moderna booster in December after my doctor had a CT scan of my chest done to rule out blood clots.

REPLY
rankinpsc1 | @rankinpsc1 | May 15, 2022

Yes, I had 1 Pfizer shot and ever since have difficulties finishing sentences at times. Some days better than others. Diet seems to make a subtle difference. No carbs or processed foods. My vision seems to go haywire at times as well

REPLY
1 reply
bettyjackson | @bettyjackson | May 16, 2022
In reply to @rankinpsc1 "Yes, I had 1 Pfizer shot and ever since have difficulties finishing sentences at times. Some..." + (show)
@rankinpsc1

Yes, I had 1 Pfizer shot and ever since have difficulties finishing sentences at times. Some days better than others. Diet seems to make a subtle difference. No carbs or processed foods. My vision seems to go haywire at times as well

Jump to this post

I also have trouble maintaining my thread of a thought...brain fog when I push my brain. It even affects my driving focus. 2&1/2 yrs since covid(unidentifid@ the time, Feb 2020). Taste&smell come&go. Endurance compromised. Equilibrium affected. Let’s hope ,now that the whole nation has become alerted, that enlightenment and treatment are coming!!!

REPLY
View MoreView Less
Please sign in or register to post a reply.