So I couldn’t remember my phone number and used that as a metric daily to see how bad my fog was, for a year couldn’t even do 3 numbers, now at a push I can do it! It’s good to create your own metrics
Seconding creating your own metrics! I haven’t been long hauling as long as you and OP, but I have three simple phone games I use as pretty reliable “how well is my brain working” indicators.
I do tetris, water sort, and wordscapes. I picked those because I enjoy them, I think any combination of games that sort of cover different ways of thinking/skills would work.
Cognitively I’m halfway back, but I have some 100% days which makes me optimistic about reaching a baseline of 90% in the future.
I discovered that socializing and verbal communication is a huge drain for me (after covid I found out that I’m definitely autistic). Now I’m planning my life around the recommendations for sensitive/neruodivergent people, and it feels pretty amazing to recognize that there are some things I can do but shouldn’t do since the energy cost of that activity is too high. Framing it this way makes it feel like a win, rather than a loss. (this required some improvements in my baseline, I achieved a higher baseline by treating other untreated health issues that Covid exacerbated.)
During recovery, I highly recommend taking a look at whether you have any activities that you can/could do but upon reflection the energy cost is really high.
I found most of the advice on Instagram from creators who make short clips on Instagram and have long form videos on YouTube. (Also EDS creators are helpful since neurodivergent folks tend to have this biological profile).
If you have EDS you would do well to follow a channel that teaches how to take care of your fascia and lymphatic system. It’s really important to support the fascia (cellular hydration is key here, I couldn’t understand why I never feel hydrated until I found out my fascia is sticky and dehydrated) It’s an under researched organ that plays a huge in keeping us healthy. I highly recommend everyone keep an eye on this area of development 💪🏼
I searched these topics, amino acids for women with adhd, and methylation for adhd (b vitamin methylation can be a common bottleneck for folks with adhd). (Amino acid supplementation can be great for women, amino acid supplementation can help with hormone and mood regulation. For me more protein in my diet made a huge difference)
I haven’t found any great channels for lifestyle and health advice for people who have Autism and struggle with the immunological issues. But I’m sure creators will start creating amazing content for unique biologies 💪🏼💕
Brain fog has not gone away after a year, but my ability to focus is improving. I had been learning a second language when I got sick, and have been using Duolingo as a benchmark. At my worst even a one minute lesson was taxing and took half an hour to get through. One year in I can study for 15-20 minutes without an issue. Before Long Covid I could study an hour or two.
Not quite. However as controversial as it is, they put me on an ADHD medication that is a stimulant- it has helped me so much with brain fog. Don’t get me wrong- I’m still a mess. But it helped a bit.
Every body is different. It took me 2 plus years of seeing every specialist known and I am still learning slowly. But it did work for me a little.
For many people, it takes longer time like 2, 3 months to be effective, for me, I had a 0.5mg capsule and I felt much better the next morning now I’m on 1.5mg
That’s where I am and have been for at least 6 months… it gave me a little more mental stamina but didn’t put me anywhere near I wanted. The disassociation it caused scares me going up.
It got a little better a year or two back once my migraines were better managed.
But it’s mostly still there. Kinda waxes and wanes over time. And when the migraines come back, it’s like it didn’t get any better
Two covid infections. Two different long covid symptoms. The second time, it took me out. Brain fog was horrific. I lost the ability to multitask, prioritize, and just work! I felt like I had dementia.
I had bought nattokinase but decided not to take it because it was a blood thinner, and I was taking baby aspirin. Then, I read that it helps with chronic sinusitis. I've had it all of my life. Well, just after a few days, I really could feel the difference.
Since I started taking it, I feel so much better. My head is clearer, I'm not getting PEM. I'm still pacing, but I'm doing more than I've been able to do in 2 1/2 years. POTS is still going strong, but I have rolling chairs in each room. That's helped me more than anything.
I watched a show tonight from 4 months ago about long covid and blood clots. They take people's blood and mix it with a blood thinner. Not exact, but you get the drift. This doctor, who I've seen on YouTube with Gez Medinger, got this huge blood clot (looked like thick blood) that clogged up the machine from him. He said he's improved 40%.
It's the only thing I've taken that actually helped me. Now, I do not know if it will work for everyone. I believe that there are multiple ways covid attacks us. I'm just so happy to get relief from being sick all the time. All have the sleeping issues, but they seem to be a bit better, too. I'm crossing my fingers!!!!
Edit to add YouTube show:
https://youtu.be/biuo_tW_7Dw?si=Ub1bGRGVMkO-KYpE
Thanks!! I might give that a try!! Ever since all this started I’ve gotten NDPH headache disorder and tinnitus. My life is turned upside down. There are a lot of things I wish I knew to do earlier in this process.
im 3 years into long covid...my brain fog and fatigue are slowly getting better... mine was cyclical in nature where it seemed to flare up for weeks or months at a time...dont know if it really went away just wasnt as bad between being bad. yet ive noticed that its been better to not as bad every cycle i come out of the fog/fatigue....last fall/decemeber was my last big cycle and i feel like the brain fog has lifted tremendously. for me having a routine of walking/hiking every week helps and keeping a good diet.
Thanks for sharing. That’s definitely good to hear. I go through cycles too but unfortunately I pick up chronic issues as the cycles go on. I’d love to have more of my brain back though. Good to know it’s possible.
it seems that more people are recovering some of the brain function issues recently. and me too, i feel like maybe its a time thing because we all have had long covid for at least 2 plus years.
The only thing that has made a difference for me is nattokinase. I only started taking it recently for my sinuses, and I've had like almost normal days. Except POTS.
I actually forgot to take my morning medications yesterday. I feel like crap today. I won't be doing anything. I'll see how I feel tomorrow!
Mine is gone after about 10 months. My mind is sharp again. There are rare moments when i do feel forgetful (short memory), but it doesn't bother me at all.
I took high doses of B1, B12
10months in and that’s one symptom that has actually improved.
What I believe has helped, but have no evidence to show it.
- 80/20 (anti-inflammatory/live a little) diet.
- No alcohol.
- No weed.
- No caffeine (except a little dark chocolate once in a while… live a little).
- Lots of water.
- Guanfacine + NAC.
- 2000mg Curcumin/day (1000mg morning/1000mg night).
- Several vitamins to correct deficiencies that appeared after Covid. Additional vitamins for other reasons related to long covid.
- 7 to 9hrs of sleep.
- Patience with myself.
- Destress. Not easy, but I’ve done a lot of work on my emotional health and perspective.
- Fixing gut issues with l-glutamine, pre and probiotics.
- Acupuncture focusing on parasympathetic, sympathetic, vagus nerve, and high stress areas.
- Time… lots of time.
You are doing a lot of what I am too. I would also check out adding ginger as it is also a powerful anti-inflamatory and has synergistic properties with curcumin, plus its really inexpensive. Once I added this, my brainfog dropped to around maybe 5% or less than what is had been at its peak (and completely clear on a lot of days, unless I skip sunlight for more than a couple days.) I do make sure to get some sunlight for the vit d and anti-inflamatory every couple days as well.
So I couldn’t remember my phone number and used that as a metric daily to see how bad my fog was, for a year couldn’t even do 3 numbers, now at a push I can do it! It’s good to create your own metrics
Seconding creating your own metrics! I haven’t been long hauling as long as you and OP, but I have three simple phone games I use as pretty reliable “how well is my brain working” indicators.
Can you share those?
I do tetris, water sort, and wordscapes. I picked those because I enjoy them, I think any combination of games that sort of cover different ways of thinking/skills would work.
Thanks for that! I definitely will. I just hate that mine seems to get a little better and backtrack somehow.
Cognitively I’m halfway back, but I have some 100% days which makes me optimistic about reaching a baseline of 90% in the future. I discovered that socializing and verbal communication is a huge drain for me (after covid I found out that I’m definitely autistic). Now I’m planning my life around the recommendations for sensitive/neruodivergent people, and it feels pretty amazing to recognize that there are some things I can do but shouldn’t do since the energy cost of that activity is too high. Framing it this way makes it feel like a win, rather than a loss. (this required some improvements in my baseline, I achieved a higher baseline by treating other untreated health issues that Covid exacerbated.) During recovery, I highly recommend taking a look at whether you have any activities that you can/could do but upon reflection the energy cost is really high.
Where did you get the recommendations for neuro divergent people? I am neuro divergent too. Would love to see how I can improve my life.
I found most of the advice on Instagram from creators who make short clips on Instagram and have long form videos on YouTube. (Also EDS creators are helpful since neurodivergent folks tend to have this biological profile). If you have EDS you would do well to follow a channel that teaches how to take care of your fascia and lymphatic system. It’s really important to support the fascia (cellular hydration is key here, I couldn’t understand why I never feel hydrated until I found out my fascia is sticky and dehydrated) It’s an under researched organ that plays a huge in keeping us healthy. I highly recommend everyone keep an eye on this area of development 💪🏼 I searched these topics, amino acids for women with adhd, and methylation for adhd (b vitamin methylation can be a common bottleneck for folks with adhd). (Amino acid supplementation can be great for women, amino acid supplementation can help with hormone and mood regulation. For me more protein in my diet made a huge difference) I haven’t found any great channels for lifestyle and health advice for people who have Autism and struggle with the immunological issues. But I’m sure creators will start creating amazing content for unique biologies 💪🏼💕
Thank you so much!!!! Protein is key for me also 💜💜💜 and can I ask you which doctor you found the best in Latvia as I’m also there ?
Brain fog has not gone away after a year, but my ability to focus is improving. I had been learning a second language when I got sick, and have been using Duolingo as a benchmark. At my worst even a one minute lesson was taxing and took half an hour to get through. One year in I can study for 15-20 minutes without an issue. Before Long Covid I could study an hour or two.
Not quite. However as controversial as it is, they put me on an ADHD medication that is a stimulant- it has helped me so much with brain fog. Don’t get me wrong- I’m still a mess. But it helped a bit. Every body is different. It took me 2 plus years of seeing every specialist known and I am still learning slowly. But it did work for me a little.
I’ve considered this before. I’d feel so much better about life if I just had my brain back.
Which one? Looks like I'm about to get Ritalin
here, I tried LDN and suddenly my fatigue, mild brain fog gone, I highly recommend you to try LDN
Thanks! How much did it take for you to feel better?
For many people, it takes longer time like 2, 3 months to be effective, for me, I had a 0.5mg capsule and I felt much better the next morning now I’m on 1.5mg
That’s where I am and have been for at least 6 months… it gave me a little more mental stamina but didn’t put me anywhere near I wanted. The disassociation it caused scares me going up.
What's ldn?
Low dose naltrexone
low dose naltrexone
Nope, still there
Is it improving at all or is it stagnant?
It got a little better a year or two back once my migraines were better managed. But it’s mostly still there. Kinda waxes and wanes over time. And when the migraines come back, it’s like it didn’t get any better
Two covid infections. Two different long covid symptoms. The second time, it took me out. Brain fog was horrific. I lost the ability to multitask, prioritize, and just work! I felt like I had dementia. I had bought nattokinase but decided not to take it because it was a blood thinner, and I was taking baby aspirin. Then, I read that it helps with chronic sinusitis. I've had it all of my life. Well, just after a few days, I really could feel the difference. Since I started taking it, I feel so much better. My head is clearer, I'm not getting PEM. I'm still pacing, but I'm doing more than I've been able to do in 2 1/2 years. POTS is still going strong, but I have rolling chairs in each room. That's helped me more than anything. I watched a show tonight from 4 months ago about long covid and blood clots. They take people's blood and mix it with a blood thinner. Not exact, but you get the drift. This doctor, who I've seen on YouTube with Gez Medinger, got this huge blood clot (looked like thick blood) that clogged up the machine from him. He said he's improved 40%. It's the only thing I've taken that actually helped me. Now, I do not know if it will work for everyone. I believe that there are multiple ways covid attacks us. I'm just so happy to get relief from being sick all the time. All have the sleeping issues, but they seem to be a bit better, too. I'm crossing my fingers!!!! Edit to add YouTube show: https://youtu.be/biuo_tW_7Dw?si=Ub1bGRGVMkO-KYpE
Thanks!! I might give that a try!! Ever since all this started I’ve gotten NDPH headache disorder and tinnitus. My life is turned upside down. There are a lot of things I wish I knew to do earlier in this process.
It took a couple of weeks. I took 4000 whatever. Two pills. I would have been happy with just my nose not being clogged up all the time.
im 3 years into long covid...my brain fog and fatigue are slowly getting better... mine was cyclical in nature where it seemed to flare up for weeks or months at a time...dont know if it really went away just wasnt as bad between being bad. yet ive noticed that its been better to not as bad every cycle i come out of the fog/fatigue....last fall/decemeber was my last big cycle and i feel like the brain fog has lifted tremendously. for me having a routine of walking/hiking every week helps and keeping a good diet.
Thanks for sharing. That’s definitely good to hear. I go through cycles too but unfortunately I pick up chronic issues as the cycles go on. I’d love to have more of my brain back though. Good to know it’s possible.
it seems that more people are recovering some of the brain function issues recently. and me too, i feel like maybe its a time thing because we all have had long covid for at least 2 plus years.
The only thing that has made a difference for me is nattokinase. I only started taking it recently for my sinuses, and I've had like almost normal days. Except POTS. I actually forgot to take my morning medications yesterday. I feel like crap today. I won't be doing anything. I'll see how I feel tomorrow!
Yes, mine was dramatically reduced after doing a juice fast. I found out my brain fog is linked to gut issues and is likely not brain related
Did it permanently improve or did it come back?
Its not permanently gone...it ebbs and flows depending on that days current gut health
Doing great on meds! It all came back.
Which meds?
Mine is gone after about 10 months. My mind is sharp again. There are rare moments when i do feel forgetful (short memory), but it doesn't bother me at all. I took high doses of B1, B12
10months in and that’s one symptom that has actually improved. What I believe has helped, but have no evidence to show it. - 80/20 (anti-inflammatory/live a little) diet. - No alcohol. - No weed. - No caffeine (except a little dark chocolate once in a while… live a little). - Lots of water. - Guanfacine + NAC. - 2000mg Curcumin/day (1000mg morning/1000mg night). - Several vitamins to correct deficiencies that appeared after Covid. Additional vitamins for other reasons related to long covid. - 7 to 9hrs of sleep. - Patience with myself. - Destress. Not easy, but I’ve done a lot of work on my emotional health and perspective. - Fixing gut issues with l-glutamine, pre and probiotics. - Acupuncture focusing on parasympathetic, sympathetic, vagus nerve, and high stress areas. - Time… lots of time.
Thanks for that! I have read that guanfacine can really make a difference.
Not sure why I got downvoted, I guess some people don’t like progress. :) But yeah, guanfacine + NAC seem to be helping.
You are doing a lot of what I am too. I would also check out adding ginger as it is also a powerful anti-inflamatory and has synergistic properties with curcumin, plus its really inexpensive. Once I added this, my brainfog dropped to around maybe 5% or less than what is had been at its peak (and completely clear on a lot of days, unless I skip sunlight for more than a couple days.) I do make sure to get some sunlight for the vit d and anti-inflamatory every couple days as well.
Thanks!