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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.

liz58 | @liz58 | Apr 3, 2022

I had one local doctor tell me its my diet if i changed that I would be better 🥺. This was after I went to mayo clinic where I was finally heard after a year and a half. It is frustrating my husband and I both have some issues with word finding. It seems to be worse when we are tired. I have taken the info I received from mayo clinic, the main thing I do is moderation in everything, to make sure I don't get tired. If I do too much I pay, but it's finding the happy medium as when I feel better I try to do more 😌 hang in there you aren't alone.

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1 reply
171 | @171 | Apr 3, 2022
In reply to @danboys "Its really too bad that doctors don't take long hauler covid seriously. It had afflicted so..." + (show)
@danboys

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.

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thank you. Not easy to find doctors here that want to listen. Neurologist I saw just turned his head without comment when I mentioned Covid. thanks for your reply.

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171 | @171 | Apr 3, 2022
In reply to @liz58 "I had one local doctor tell me its my diet if i changed that I would..." + (show)
@liz58

I had one local doctor tell me its my diet if i changed that I would be better 🥺. This was after I went to mayo clinic where I was finally heard after a year and a half. It is frustrating my husband and I both have some issues with word finding. It seems to be worse when we are tired. I have taken the info I received from mayo clinic, the main thing I do is moderation in everything, to make sure I don't get tired. If I do too much I pay, but it's finding the happy medium as when I feel better I try to do more 😌 hang in there you aren't alone.

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Mine doesn't bother to mention diet. I've never been asked what I eat. I've been pretty much plant based for past 2 years. My brain fog is usually worse early morning -- and yes, when I' m tired. Thanks for your reply.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 9, 2022
In reply to @171 "Frustration with finding words when needed. On the strange side, suddenly names pop up that have..." + (show)
@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.

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@171 @danboys @liz58, I’m sorry to hear that you have had experience with medical providers not acknowledging long COVID. Long COVID is real. It is a syndrome that patients, clinicians and researchers are actively learning about. Luckily there are Post COVID Care Clinics devoted to researching long COVID and caring for people who have long-term effects from COVID. I hope that you are able to find a medical partner who will work with you and that you’re on the road to recovery.

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babyweedah88 | @babyweedah88 | Apr 14, 2022

I’m glad to hear it isn’t just me! I’m 16 months post initial Covid infection with a headache, intense brain fog, fatigue, and other neurological symptoms. Relief will come for all of us!

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1 reply
tee68 | @tee68 | Apr 15, 2022
In reply to @babyweedah88 "I’m glad to hear it isn’t just me! I’m 16 months post initial Covid infection with..." + (show)
@babyweedah88

I’m glad to hear it isn’t just me! I’m 16 months post initial Covid infection with a headache, intense brain fog, fatigue, and other neurological symptoms. Relief will come for all of us!

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I have had severe sleep issues brain fog rapid weight loss palpitations high blood pressure , hair loss, but the worst is waking up around 2:30, 3:30 and I can’t fall asleep because of pressure in my head . This happened after I got Covid in December with the two vaccines. I have been going from doctor to doctor with no end is sight. So far no answers from any of my doctors.

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1 reply
leen | @leen | Apr 15, 2022

I just finished day 1 of 2 of a course as part of the long covid clinic at Mayo Rochester. It talked about central sensitization. I have some extent of what you are mentioning. Learning about my brain and how highly sensitized it is after covid, all else I experience makes more sense. There are ways to try to calm it . Guess after class 2 I'll find out if I it works.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 15, 2022

Welcome @babyweedah88 and @tee68.

@leen, I'll certainly be interested to hear more as you learn about central sensitization syndrome (CSS) and how understanding CSS will help with long COVID recovery.

Here's an excellent introductory primer on CSS by Mayo Clinic's Dr. Sletten

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1 reply
leen | @leen | Apr 15, 2022
In reply to @colleenyoung "Welcome @babyweedah88 and @tee68. @leen, I'll certainly be interested to hear more as you learn about..." + (show)
@colleenyoung

Welcome @babyweedah88 and @tee68.

@leen, I'll certainly be interested to hear more as you learn about central sensitization syndrome (CSS) and how understanding CSS will help with long COVID recovery.

Here's an excellent introductory primer on CSS by Mayo Clinic's Dr. Sletten

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I am, too!

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chinnk13 | @chinnk13 | Apr 18, 2022
In reply to @leen "I just finished day 1 of 2 of a course as part of the long covid..." + (show)
@leen

I just finished day 1 of 2 of a course as part of the long covid clinic at Mayo Rochester. It talked about central sensitization. I have some extent of what you are mentioning. Learning about my brain and how highly sensitized it is after covid, all else I experience makes more sense. There are ways to try to calm it . Guess after class 2 I'll find out if I it works.

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What kinds of things are they telling you to do? That sounds hopeful!

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