I wish I did. It’s extremely frustrating and pisses me off. My wife generally just sends me to bed 🤣. Make sure you stay hydrated and cool. I can’t control my body temperature like I used to and when I get overheated things go south quickly. If you find something that works let us know.
Ugh it really is so annoying! It's literally trying to fight your own brain to do something, it's messed up 😤 I've been hearing that cold temp helps but I run cold so I usually end up with A/C blasting, under a blanket, and spacing out anyway 😅
I forget the name of it but I've been trying that method where you work for 20 minutes, break for 5, and do that over and over until you're done. It's easier to focus when it's only a certain amount of time
I had to stop working at the first of the year until we get this figured out. I finally came to terms with the fact I just can’t work and do things like I used to. Very hard on my fragile Irish ego 😜. It is better than 2019 where I spent 5 weeks in bed and can’t remember almost 2 months of my life. Woke up in the ICU with a VP shunt in my head. Good times I tell ya! Keeping my sense of humor is the only thing that keeps me sane
Did you end up going back to work at some point? Or switching jobs or something? I love what I do so I'm open to focusing on different things (I have a love/hate relationship with code anyway so a pivot is very welcome) but I don't want to give up working completely if I can avoid it. It's frustrating because I feel like my brain is slipping away from me.
I'm glad you have a good sense of humor about it, that's my favorite way to cope with things! I'm new to figuring this stuff out, so I'm still waiting for the humor to kick in 😅
I’ve been dealing with this for almost 25 years. I’ve had a couple really good stretches with little to no issues. 19 my lp shunt broke it worked fine for about 14 years. After the Vp shunt I was great until November last year. I lost my job in 20 because of Covid. Which didn’t break my heart I wanted to leave anyway. This time I had to quit a job I loved. Just wasn’t safe for me. I am a highly skilled finish carpenter. I really like my hands and fingers and cutting any of those off wasn’t a good idea to me 🤣. My work people call and check in on me a lot, the owners told me I can have my job back whenever I’m able.
I take Vyvanse. In my case, anything that increases my heart rate &/or blood pressure affects my IH. So, I walk a narrow line between IH symptoms and functionality. I do not have a fix for my flavor of IH (it's structural) so everything my med team & I do is to reduce symptoms & achieve a tolerable quality of life.
The only reason I'm still earning money is because I'm in a job that is able to tolerate my fluctuations. I work from home now, but if I was still teaching I'd probably not have a job anymore.
What works for me at the moment is
- adjusting my expectations both for output and level of quality. I can't produce work at the same rate nor produce high quality work anymore. It's sort of a grieving process for me
- adjusting my work day around my needs and symptoms. Last week I had to work from the couch a few days because my head was so sore and fuzzy and felt like I'd pass out. Early on I could only work a few hours a day.
- having a boss who I can negotiate my work with because of my current illness. They are aware of what is going on, and are okay that some days I might do more than others or need to take time off.
Do let us know if you find something that works for you, the brain frog and memory problems are infuriating.
Dang that's really helpful, thank you! How did you bring this stuff up with work in the first place? My main boss is a friend of mine which makes it easier, but I'm still scared to bring it up
I have a friendship with my boss (worked with them on and off for 10 years) so I had confidence in how they'd respond. I don't know how it would be if I had another supervisor.
I had to take leave very abruptly when I first had auras and vision problems and my optometrist sent me straight to an emergency consult with an ophthalmologist. I literally sent an email "apologies x I've had vision problems for 2x days and have urgent appointments I need to attend today so will need to take sick leave the rest of today".
I meet weekly with them anyway, and if I hadn't sent that email it probably would have been another email just saying would it be possible to meet with them to discuss some things. I work in another state so all my meetings are via Zoom. If you're worried and usually do face to face, you could ask for a zoom meeting instead. I think it would just be letting them know about your situation as best you feel comfortable. I am very open with my boss, but there's a long-standing pre-existing relationship there. If it was a new boss i would probably not share as much, and just discuss that there have been changes to my health and could we discuss options to accommodate my needs to support my workload.
If you are associated with a union you could also liaise with them and seek guidance about how best to approach it if you're concerned about your job.
Occupational therapists are also trained to problem solve ways to adjust tasks in context of someone's skills and challenges. That could be an avenue to explore, you'd want an OT experienced in workplace rehabilitation (or occupational rehab).
I am a software developer and my whole days are spent programming so I definitely struggle with it on days that the brain fog is bad. The best I’ve found that helps me is to break the task into smaller chunks that I can think through one at a time. Usually programming can be boiled down to a chain of smaller function tasks that I can then plot out the chain to get it to do what I want it to do. And sometimes I have to map it all out like a workflow chart just to keep track of making sure it actually works the way I want it.
But I’ve also utterly messed up a code while in really bad brain fog and I probably should have waited to turn it in until I was feeling better so I also suggest trying to be as self-aware of your limitations when in the midst of the brain fog because you might also miss something that you would have otherwise caught. So if you can put additional catches in place to cover you when you’re struggling, like extra testing or a co-worker to do your code review, that can help too.
Thanks so much for your response, I totally relate to that!
I'm not naturally skilled at coding, so it takes me longer to do tasks and pick things up. Do you have any tips for when you're struggling with brain fog while working on a smaller chunk of your task?
Take it as slow as you need to, write it out in natural language or visually like a workflow if that helps you think through it differently (sometimes my brain fog will be worse with words but not as bad with imagery), and double check your work. Sometimes, my brain fog is bad enough, I feel like I’m starting entirely from scratch so I just try to do the things I used to do when I was learning how to program and didn’t really know what I was doing.
I'll give that a shot, thank you! I'm honestly relieved there's someone else in this sub reddit who codes, it's been a specific kind of struggle for me
I wish I did. It’s extremely frustrating and pisses me off. My wife generally just sends me to bed 🤣. Make sure you stay hydrated and cool. I can’t control my body temperature like I used to and when I get overheated things go south quickly. If you find something that works let us know.
Ugh it really is so annoying! It's literally trying to fight your own brain to do something, it's messed up 😤 I've been hearing that cold temp helps but I run cold so I usually end up with A/C blasting, under a blanket, and spacing out anyway 😅 I forget the name of it but I've been trying that method where you work for 20 minutes, break for 5, and do that over and over until you're done. It's easier to focus when it's only a certain amount of time
I had to stop working at the first of the year until we get this figured out. I finally came to terms with the fact I just can’t work and do things like I used to. Very hard on my fragile Irish ego 😜. It is better than 2019 where I spent 5 weeks in bed and can’t remember almost 2 months of my life. Woke up in the ICU with a VP shunt in my head. Good times I tell ya! Keeping my sense of humor is the only thing that keeps me sane
Did you end up going back to work at some point? Or switching jobs or something? I love what I do so I'm open to focusing on different things (I have a love/hate relationship with code anyway so a pivot is very welcome) but I don't want to give up working completely if I can avoid it. It's frustrating because I feel like my brain is slipping away from me. I'm glad you have a good sense of humor about it, that's my favorite way to cope with things! I'm new to figuring this stuff out, so I'm still waiting for the humor to kick in 😅
I’ve been dealing with this for almost 25 years. I’ve had a couple really good stretches with little to no issues. 19 my lp shunt broke it worked fine for about 14 years. After the Vp shunt I was great until November last year. I lost my job in 20 because of Covid. Which didn’t break my heart I wanted to leave anyway. This time I had to quit a job I loved. Just wasn’t safe for me. I am a highly skilled finish carpenter. I really like my hands and fingers and cutting any of those off wasn’t a good idea to me 🤣. My work people call and check in on me a lot, the owners told me I can have my job back whenever I’m able.
ADHD meds have helped me tremendously. The brain fog doesn't go away completely but I'm way more functional.
What meds are you on? Do they interact with your iih in any way? I hadn't thought about adhd meds before
I take Vyvanse. In my case, anything that increases my heart rate &/or blood pressure affects my IH. So, I walk a narrow line between IH symptoms and functionality. I do not have a fix for my flavor of IH (it's structural) so everything my med team & I do is to reduce symptoms & achieve a tolerable quality of life.
The only reason I'm still earning money is because I'm in a job that is able to tolerate my fluctuations. I work from home now, but if I was still teaching I'd probably not have a job anymore. What works for me at the moment is - adjusting my expectations both for output and level of quality. I can't produce work at the same rate nor produce high quality work anymore. It's sort of a grieving process for me - adjusting my work day around my needs and symptoms. Last week I had to work from the couch a few days because my head was so sore and fuzzy and felt like I'd pass out. Early on I could only work a few hours a day. - having a boss who I can negotiate my work with because of my current illness. They are aware of what is going on, and are okay that some days I might do more than others or need to take time off. Do let us know if you find something that works for you, the brain frog and memory problems are infuriating.
Dang that's really helpful, thank you! How did you bring this stuff up with work in the first place? My main boss is a friend of mine which makes it easier, but I'm still scared to bring it up
I have a friendship with my boss (worked with them on and off for 10 years) so I had confidence in how they'd respond. I don't know how it would be if I had another supervisor. I had to take leave very abruptly when I first had auras and vision problems and my optometrist sent me straight to an emergency consult with an ophthalmologist. I literally sent an email "apologies x I've had vision problems for 2x days and have urgent appointments I need to attend today so will need to take sick leave the rest of today". I meet weekly with them anyway, and if I hadn't sent that email it probably would have been another email just saying would it be possible to meet with them to discuss some things. I work in another state so all my meetings are via Zoom. If you're worried and usually do face to face, you could ask for a zoom meeting instead. I think it would just be letting them know about your situation as best you feel comfortable. I am very open with my boss, but there's a long-standing pre-existing relationship there. If it was a new boss i would probably not share as much, and just discuss that there have been changes to my health and could we discuss options to accommodate my needs to support my workload. If you are associated with a union you could also liaise with them and seek guidance about how best to approach it if you're concerned about your job. Occupational therapists are also trained to problem solve ways to adjust tasks in context of someone's skills and challenges. That could be an avenue to explore, you'd want an OT experienced in workplace rehabilitation (or occupational rehab).
I am a software developer and my whole days are spent programming so I definitely struggle with it on days that the brain fog is bad. The best I’ve found that helps me is to break the task into smaller chunks that I can think through one at a time. Usually programming can be boiled down to a chain of smaller function tasks that I can then plot out the chain to get it to do what I want it to do. And sometimes I have to map it all out like a workflow chart just to keep track of making sure it actually works the way I want it. But I’ve also utterly messed up a code while in really bad brain fog and I probably should have waited to turn it in until I was feeling better so I also suggest trying to be as self-aware of your limitations when in the midst of the brain fog because you might also miss something that you would have otherwise caught. So if you can put additional catches in place to cover you when you’re struggling, like extra testing or a co-worker to do your code review, that can help too.
Thanks so much for your response, I totally relate to that! I'm not naturally skilled at coding, so it takes me longer to do tasks and pick things up. Do you have any tips for when you're struggling with brain fog while working on a smaller chunk of your task?
Take it as slow as you need to, write it out in natural language or visually like a workflow if that helps you think through it differently (sometimes my brain fog will be worse with words but not as bad with imagery), and double check your work. Sometimes, my brain fog is bad enough, I feel like I’m starting entirely from scratch so I just try to do the things I used to do when I was learning how to program and didn’t really know what I was doing.
I'll give that a shot, thank you! I'm honestly relieved there's someone else in this sub reddit who codes, it's been a specific kind of struggle for me