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.

Ay que transformarse, adaptarse y nunca conformarse , es peor cuando entran en desesperación y frustración si los resultados no son los esperados. Dos años con síntomas fijos otros vienen y van, sigo poco a poco ya no planifico mis días porque es agotador hago lo que mi cuerpo puede cuando puedo hacer un poco hago más y cuando no espero al siguiente día que sea mejor

REPLY

Anyone else on here trying ketamine? My husband has had 5 infusions so far and his last is scheduled for this coming week - typically a 6 trt protocol. Useful for PTSD, depression and providing a "brain reset". So far seems to be helping, so I wanted to share in case it works for others. It isn't covered by insurance though... and you will need a dr referral which can be difficult to obtain if your docs are conservative and just keep recommending that you " wait and see" rather than providing an opportunity that doesn't have a great deal of NIH backed data yet.

REPLY

I feel like I am not a responsible driver....just not on my game, easily distracted. Scary

REPLY

2 years of hell!!! Brain not working etc etc. no solution. Who can help me. Not any normal softer has a clue!!!!!

REPLY
@joe1919

2 years of hell!!! Brain not working etc etc. no solution. Who can help me. Not any normal softer has a clue!!!!!

Jump to this post

Joe, where or who to go to for help is a good question. As a first step, I recommend seeking out a clinic that specializes in post COVID recovery. Typically they are called PCCCs or Post COVID Care Clinics. See a listing of PCCCs on the Survivor Corps website here: https://www.survivorcorps.com/pccc

REPLY

It is horrible side effect from covid. A lot of the very few clinics there are in this country, such as the big one here in San Francisco at UCSF medical school, only accept you if you’ve tested positive. This leaves everyone else out. There are lots of false negatives and also a lack of testing, especially at the beginning of the epidemic. I hope you can find one to help you.

REPLY

I was hit by Covid as soon as it hit America. ThAT IS 2 years ago! Living in travers city…for the first year no help or knolage. By time the virus became everywhere. Things started to help.
The problem the fog was not recnized until it had taken over my brain…..no help or even recognized by doctors what it was. Or now is!!!!!
Any help would be news for me.

REPLY

don't know if this applies. I had 2 episodes of involuntary propelled forward walking. Lasted seconds. 8months apart, No after effects. MRI and EEG show nothing abnormal. after 2 years still don't have full recovery of smell.

REPLY
@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.

Jump to this post

Frustration with finding words when needed. On the strange side, suddenly names pop up that have no connection with what I'm doing, which I've had to look up to see who they were. Making bread one day I suddenly began singing a song I must have sung in the 3rd of 4th grade. Not only did I remember the melody but all the words as well. 5 minutes later I could not recall it. These are just 2 examples. Now have buzzing in both ears, fluctuations in body temperature in minutes. Some foods I like don't taste the same or taste awful. My smell comes and goes. I've had MRI's and EEG's. Both normal. Past problems have been chest pain, terrific jaw pain for weeks, sharp pain behind eyes, leg pain, digestive problems. All testing was negative. Had Covid March 2020. My primary doctor scoffs when I've mentioned Long Covid.

REPLY
@171

Frustration with finding words when needed. On the strange side, suddenly names pop up that have no connection with what I'm doing, which I've had to look up to see who they were. Making bread one day I suddenly began singing a song I must have sung in the 3rd of 4th grade. Not only did I remember the melody but all the words as well. 5 minutes later I could not recall it. These are just 2 examples. Now have buzzing in both ears, fluctuations in body temperature in minutes. Some foods I like don't taste the same or taste awful. My smell comes and goes. I've had MRI's and EEG's. Both normal. Past problems have been chest pain, terrific jaw pain for weeks, sharp pain behind eyes, leg pain, digestive problems. All testing was negative. Had Covid March 2020. My primary doctor scoffs when I've mentioned Long Covid.

Jump to this post

Its really too bad that doctors don't take long hauler covid seriously. It had afflicted so many people !y husband being one of them. Thankfully my doctor takes it seriously. Maybe you should find a new doctor willing to take your symptoms seriously because they are real. Good luck.

REPLY
Please sign in or register to post a reply.