How are you coping if you have long term brain fog from covid?

Posted by dh524 @dh524, May 30 7:39am

Brain fog has been persistent since I got Covid a year ago. I have to read everything 3 or 4 times and then forget what I read like for example instructions. Is anyone else dealing with this?

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@armalone

My mind is the same way and just keeps getting worse. I introduced myself to a salesman twice and had no clue I just had like a min ago. It’s embarrassing and nobody understands

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Not nobody 🤗

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I have had an autoimmune disease for about 30 years and the long Covid sounds so much like that. I do have a CPAP. I take sublingual B-12 in the morning; make sure I stay hydrated and often use Systane eye drops as blurriness in vision makes me feel off. I have had periods of stuttering but usually whatever stressful situation is resolved, I am better. I avoid being in a hurry; get exercise and hope that people I am speaking to will give me that 20 seconds to create a sentence.

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@joanland

The long-term brain fog now comes and goes. I rely on lists for almost everything, lists and sticky notes. Rest, copious rest is about the only thing that I can do to alleviate it. Fortunately, I'm retired, but this is now how I had planned to spend my retirement.

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Boy, can I relate to what you shared in this discussion group. I have lists everywhere and I struggle to have the energy to force myself to complete as many as I can in any one day. It's a challenge!

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My lists are not so much what needs doing but of things that I need to remember - OOPs! They are of things I need to do, i.e., call the window washer, check the supply of furnace filters, etc. Yep, things to do.

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I am so sorry. I have had this from the start of my Long COVID almost 4 years ago. I still work. Luckily I can work from home. However, I have to be careful about scheduling meetings. I can't find words at times. Sometimes what I am thinking and what I say are completely different. It is very embarrassing. I have told people I work with closely so they know why have changed so much. I agree with those that say rest. Through my Long COVID clinic, I have been told to limit any physical activity to 20 minutes per hour. To get lots of rest. To not overdo it. I have had to look up words to write this response. I am very tired. With my family, I can play guess what I am trying to say. Long COVID attacked my neurological system - Vagus nerve. I have a lot of issues. I am doing my best with what I now have to deal with. I have not tried cognitive nor speech therapy yet. I wish us all good luck with dealing with our very new lives. I wish us all the ability to find good things in our lives.

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@jwatzig

Got to say I am with you with the conversation thing. I know what I want to say, then I start to talk, and the words don't come out, or the wrong words do. Quit embarrassing!
About 3 years in, and many tests, Brain MRI, and all good.
Good luck with yours.

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Same

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@armalone

My mind is the same way and just keeps getting worse. I introduced myself to a salesman twice and had no clue I just had like a min ago. It’s embarrassing and nobody understands

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Potential New Treatment for "Brain Fog" in Long Covid Patients by Isabella Backman. This was released by Yale School of Medicine and involves taking 600mg of NAC which is an OTC and starting with 1 mg Guanfacine which is a prescription ADHD drug also used for many things including traumatic brain injury. I've had the brain fog since March of 2020. I've been using the NAC for two weeks now and it is helping and will have my doctor prescribe the Guanfacine. The doctor, Arman Fwaharaki-Zadeh,MD PhD, who treats patients with traumatic brain injury tried this on Long-Covid patients and authored this article. It is a must read article. I've also read an article on the use of low-dose Naltrexone and its positive effect on LC.

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Correction: The doctors name is Arman Fesharaki-Zadeh if spell check doesn't change it again!

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@bboeshore

Potential New Treatment for "Brain Fog" in Long Covid Patients by Isabella Backman. This was released by Yale School of Medicine and involves taking 600mg of NAC which is an OTC and starting with 1 mg Guanfacine which is a prescription ADHD drug also used for many things including traumatic brain injury. I've had the brain fog since March of 2020. I've been using the NAC for two weeks now and it is helping and will have my doctor prescribe the Guanfacine. The doctor, Arman Fwaharaki-Zadeh,MD PhD, who treats patients with traumatic brain injury tried this on Long-Covid patients and authored this article. It is a must read article. I've also read an article on the use of low-dose Naltrexone and its positive effect on LC.

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Thanks for sharing. I’ve also come across this article and wondered about the NAC. I’m nervous about stronger medications because I’m so sensitive to them (like the stimulant guanfacine) but good to know you’ve had a positive response with the NAC.

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@bboeshore

Potential New Treatment for "Brain Fog" in Long Covid Patients by Isabella Backman. This was released by Yale School of Medicine and involves taking 600mg of NAC which is an OTC and starting with 1 mg Guanfacine which is a prescription ADHD drug also used for many things including traumatic brain injury. I've had the brain fog since March of 2020. I've been using the NAC for two weeks now and it is helping and will have my doctor prescribe the Guanfacine. The doctor, Arman Fwaharaki-Zadeh,MD PhD, who treats patients with traumatic brain injury tried this on Long-Covid patients and authored this article. It is a must read article. I've also read an article on the use of low-dose Naltrexone and its positive effect on LC.

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I started taking this combination on Dec 24th 2022. I woke up Christmas morning and wept because it was the first time in two years that I wanted to get up and just engage in life. It hasn’t fixed everything but the difference has been amazing.

Guanfacine is not a stimulant. In fact, it lowers blood pressure (which is an added benefit for me). I have also been taking a stimulant (Vyvanse) since early 2021, but after starting on Guanfacine I’ve lowered the stimulant dose to half what it was before. The combination has made it so I no longer worry about being able to continue working, and I can work full days without crashing.

I had tried NAC for a while before I started with Guanfacine and didn’t notice any real difference. I am taking it now as described in the article. I am up to 3mg Guanfacine, but unless you have high blood pressure that might cause dizziness.

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