Hello. Hope everyone is doing OK. I have a question, and I'm curious... I have seen posts in the past talking about brain fog..
Recently I have moments when I really can't connect thoughts or process. I literally cannot do certain things. For instance I got home tonight to help my son with some homework and admittedly it was those reasoning tests.. And I really felt like I was wading through treacle trying to connect the synapses in my brain.
Now, I am super tired and I have put this down to cognitive overload.. I just can't process anymore until I've slept and rebooted..
Is this similar to the described brain fog? Does anyone else experience similar?
All the best
Katherine
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Mrs_Average
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Hi Mrs-Average,I have a lot of the symptoms you mention ref:cognitive funtioning but I don't know if that is from the 2nd stroke I had in 2015 as I sometimes still have problems with my coordination and texting. Intially after the stroke I couldn't text at all, it came all jumbled up and no one understood it,so I stopped texting for a good until I slowly improved, I am still slow at texting to date and regularly phone people instead to make it easier,so I believe my cognitive issues are down to the stroke but I suppose it could also be exhaustion as than I notice it getting worse. Atb,tina.🤗
Hi katie, In a way it was,I was having terrible various symptoms for some time, cyanosis,vision problems,numbness,pin& needles,etc.. I changed my Gp when he dismissed all my symptoms and signed up with a new Gp. Just before I was due to have my medical checkup, I collapsed in the bathroom and went blind for a couple of minutes and felt very dizzy,my then Husband wanted to call an Ambulance but I refused to let him. When I saw my new Gp I told what had been happening,he sent me to a vascular surgeon or in turn sent me for a Mri scan and discovered I'd had a small stroke. I mentioned my continuous symptoms and he noticed my off the scale blood results which had been like that for some time,that started a series of 6 months of tests,Heart, blood, just about every test going until finally I ended up at Haematology were they suspected Leukemia and ordered a Bmb were I was diagnosed with Etjak2. That was 11years ago. Then in 2015 I had a more significant stroke while on Hu and aspirin. Still on Hu but with Clopidogrel now besides a host of other meds for other medical issues. All in all I do consider myself very lucky and their are a lot of people worse of than me and I manage my conditions the majority of the time.By the way katie I am in with Dr this morning after taking your advice the other day regarding my lingering chest infection? Atb to you Katie.x🤗
Hi Katherine, I’m not one of the many who’s posts you’ve read describing brain fog but I get impaired cognitively when I’m exhausted. It’s relatively profound. And my exhaustion is related to my MPN. I must say I’m glad it’s you & not me helping kids with homework or they’d be in trouble. Good luck! Katie
I've just read your post to hubby who is Jak2+ ET/PV and he says "Yep, that pretty much sums it up, like treacle describes it well. Mine feels very much like fog in my brain but unfortunately it doesn't always clear after sleep. It does get clearer after a Venesection for a few days but my brain is very much disconnected. I'm relieved it wasn't what I feared initially - I thought I had alzheimers but was diagnosed with an MPN instead".
Wishing you well and hope son gets good marks for his homework.
Oh yeesss! I get to the point where quite frankly I have no idea what anyone is talking about and I can’t get the words out of my mouth let alone write down a coherent sentence. I usually go to bed! :)) Providing I’m well slept - and now that my counts are more or less pretty normal - I can usually get through the day but certainly in the past it has been a challenge. I’m still wary about being required to appear intellectually engaged and responsive in the evenings. So hard trying to keep up appearances. :)))
I feel half asleep most of the time, unable to think clearly or remember things. On a good day, I get a few hours early in the day when I feel more alert and capable but many days I'm out of order all day - a bit like having the flu or cold and fever. And I sleep/nap a lot. Not because it is very refreshing, but because I just can't keep my eyes open or think what I am trying to do well enough to continue. A few hours of physical exercise helps me sleep and a good sleep helps me feel and function better, but I have had to stop working (computer/desk job) - down to a few hours a month now. I can't keep up with a regular workload. Occasionally I have done a few days and one time recently two weeks of "full time" work. It exhausted me and it took me a few weeks to recover, so I won't do that again.
You are in the position I fear. I am so determined to hang on to my work as a source of discipline but am becoming increasingy incapable due to lack of concentration and fatigue. I cannot do anything recently but sit! My eyes are constantly trying to close but I don't sleep well. I do some exercise and small amount of yoga daily and walk in a morning with my dog but I know I need more to improve how I'm feeling. Why can I not just get on my bike and cycle round the block as I used to?
I too do a lot of sitting and my eyes would usually rather be closed. My doctor encourages me and I do try to get some exercise. She says I will need my strength/health for what might come. I am very lucky to work with a group that lets me work from home and as many or few hours as my condition allows, short term customer commitments aside. Not the routine of going in to the office on a regular schedule but I simply couldn't do that any more. For many months I was essentially not working at all - less than 10 hours a month. Lately, I have been a bit better and working a bit more. I really enjoy being productive and it helps motivate me generally. If I could, I would work full time for another 10 years, before retiring. But at least my condition isn't painful. I can rest peacefully enough. We have a large yard and garden. Weeding, mowing, pruning the fruit trees, etc. gives me several hours a week of mild exercise, which I really enjoy. Otherwise, I try to do a bit of weight lifting, but I'm not very consistent / persistent.
Often, I don't feel tired exactly. I just don't feel like getting up and doing things. I think of the things I should do but can't bear to get on with it. I do a lot of procrastinating. I know depression is a possible side effect of the interferon I am taking but I don't think of myself as depressed. I'm quite happy most of the time and do enjoy simple pleasures. It's an odd mix of feelings, like my physical feelings. I often feel like I have a mild flu. Not full on nausea but not much appetite and if I eat more than a little bit, I get a vague feeling that I don't want any more. On the positive side, I am nice and lean again. But I have been losing too much weight. I try to eat small amounts several times a day and avoid eating late in the evening.
It's not the best situation, but I am grateful that I am not much in discomfort, so I can enjoy what I can do. I even enjoy the naps Compared to many others, I have it easy.
Also on Interferon, I am having similar experiences with a smaller appetite and have been losing weight at an alarming rate, without feeling particularly hungry. I am trying to combat it by eating whenever I feel I can, rather than waiting until I'm hungry.
I too am fatigued very easily. I only work two days a week now but those days completely wipe me out. On days when I can wake up at a time that suits me, and stop and have a rest when I choose, I feel much better and even the flu like symptoms are reduced. I am currently doing the sums to see if I can afford to stop work for the sake of quality of life.
Again this post reminds me why I'm involved with this group! For years and years, I was treated for epilepsy - temporal lobe epilepsy - for my absence seizures. I literally couldn't pull sentences together and would break out in a cold sweat if someone asked me what was two plus two. I'm still unsure whether I've ever had epilepsy or if my seizures were brain fog but some of my symptoms match what has been described here. Who knows? I still have 'seizures' and am exhausted afterwards, sometimes with a headache, but am not taking medication for it and only experience this approximately twice yearly...
You are definitely not alone in this. I have ET jak2+ and have been on Hydroxycarbomide for 2 years. I am increasingly noticing an inability to recall facts at will. Wading through treacle describes it pretty well, and sometimes it feels as if there is a physical barrier that I cannot break through to get at the answer. I know it's in there but it's just frustratingly out of reach. Names of people seem to be the worst area, which can be very difficult in social situations.
It is frustrating but as it is a well recognised side effect of ET / hydroxy I guess it comes as no surprise. In my case it doesn't seem to be linked to fatigue.
I think we all have to develop our own coping mechanisms to minimise the impact.
Well done Mrs-'not at all average'. You are doing really well. Even when I have slept and awoken the next day I still cannot do so. That is one of the most debilitating symptoms I suffer. You put it really well. I look around my houme and go into a panic and the most mundane, everday tasks that need doing and cannot process the way to actually start them, let alone finish them. I am referring to tasks such as dusting, etc. I feel useless and guilty for not doing things but my brain has become virtually useless.
I believe these issues are down to the ET, JAK2+ and the medication. That and the intense fatigue, which seems to be lasting longer and longer, since reducing my dosage are no fun at all. I hope 'you' find some control over these but I am in an all time low at present!
Thank you for sharing. Sorry to hear that you are having a hard time of it.. I do find it goes on phases for sure. I hope it passes for you and you find some more strength.
Hardly average, you are a rare and unique individual!!
I have issues with brain fog as well, just as you describe. What I do is take a supplement called Benfotiamine, it is a fat soluble version of Thiamine. Our brains need thiamine to function well, but they need the fat soluble version to access it. I take 300 mg once a day and notice a difference, I stopped for a week just to see and there was a difference. Even with that there are some days that some problems I deal with at work seem strange. A cup of coffee seems to help then. Benfotiamine is also used by diabetics to help with neuropathy.
Nice to hear that I am not alone! I was just put on a few weeks sick leave at my work cause I can’t seem to function! I have brain fog often ! I just go blank then the anxiety and frustration kick in ! GP saying she think I am on depression???omg I don’t feel depress at all if I am at home! Wish she would understand my daily reality and my disease! I was diagnosed with ET 5 years ago that cause a heart attack at 48 years old! Now it polycethemia Vera! Starting phlebotomy this week! Not sure if a change in work will help?? Working for the government right now, but was offered to go back in the school system as a specialized educator( less hours of work per day? Sk really not sure what to do?
Hi you need to do what is right for you. I was a Deputy Principal and have just been given ill health retirement at 47. I fought against it but realised how poorly work was making me. I still have fatigue and brain fog and visual distances but life is a little more manageable without the stress. Take care. Jx
Try to take the less stressful job and laugh when your brain goes blank if you can. When I get totally blank moments I look at it as a little bit of quiet and rest for my brain. When I struggle against the brain fog I think it makes it worse.
ET, Jax2+, hydroxy 1 year. You describe my brain fog exactly. I have learned to laugh when I have the worst blank brain and my friends tell me it's fun to talk to me because I laugh so much (guess that means I have a lot of blank brain!) I don't push against it anymore, if the brain is not working I move on.
There are things I can't do anymore because I can't figure out the steps I need to take to accomplish what used to be simple tasks, but as long as I remember to pants on before putting my shoes on I feel pretty good about myself.
What a great way to manage! I K ow I am fighting.. I have a full on job, and it's full on at home too. Not getting enough rest time, although I am currently sitting on the sofa 👍
Hi Katherine, what you have described is definitely brain fog. I get it so bad that if I have to talk to anybody on the phone I immediately tell the person I am talking to that I have a condition and treatment that affects my train of thought so please be patient. I hate talking to new people or on the phone so I get my husband to do it when I can.
I have had 2 TIAs and I was so relieved when I saw my brain scan as I was so worried I was getting dementia!
Don’t worry, it’s just part of the MPN symptoms and is harmless.
Big thank you to everyone for all the helpful replies.. You've also succeeded in helping me laugh about it all.. Saw a great cartoon today which I'll try to add to this post that just sums it up for me right now..
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Compared to many others, I have it easy.
Brain fog, fatigue and burning feet.
Working with fatigue and brain fog=PV
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How long before you are diagnosed?
