Can we talk about brain fog again?

Hi Jill

I have managed to reply to your PM as I was having problems before due to the ongoing new website.

Hope you have managed to access it your end o.k.....let me know if you can

Andrea

That's disgraceful.

If your GP is not supportive, I'd ask her to clinically justify withholding an established route of care, because that's what this is on both counts. Then report her to the FPC and then BMA.

Hi Jill, I suffered in this way for many years untill it got so bad I honestly thought I had early stage Dementia. Both my mother and father suffered from this so you can imagine how I was feeling. It took 6 months for my doc to refer me to a neurologist and another 4 months to see him, get scan and then results. I am so glad to say all was clear and absolutely no signs of dementia ( can't use it a an excuse anymore..lol). He was a lovely guy and also checked for any Bd activity. He said it was initially due to pain...not sleeping well......meds........still not sleeping well.....a d anxiety because I didn't know what was the cause of memory dizziness, slurred speech etc etc....not sleeping....and finally in a roundabout way the NHS because it takes so long to get a GP to do the referral and then the long waiting lists. We had a long talk and he gave me some good advice. Cut down on certain meds(which I successfully achieved without consequence to my BD/Spine probs. learn to relax and even nap in the day if I need to, buy a good mattress and chair to help with my back/neck pain, a few simple exercises. Anyway I did all the above and more and my brain is now functioning as it should. I think knowing that nothing was wrong and reducing meds was the biggest reason for my problems, I feel like a different person and my family and friends have noticed as they were starting to worry about me. Hope this helps.

Take care and Hugs

Billi

Oh Beau you are quite right not to put up with inferior treatment but I possibly should have explained that my GP thinks full time work is too much combined with the BD and wants me to take some time out and try and kick back and relax and see if that helps. I have had 3 weeks off and am dramatically less fatigued which does seem to reduce the brain fog a bit.

So in a way I have done a bit like Billi and trying to improve the situation a little more naturally I guess.

I am so lucky with my GP, lord knows how I would have got along without her.....she believed in me every step of the way...its so vital to have a good relationship with a GP I think .

Anyway thank you both for responding Jill x

Hello Jill,

First of all, I`m so sorry you`ve been having to deal with this. Its bad enough not having to feel sick and pain all the time, but then to start having extreme brain fatigue just makes it all that much worse. One thing I have noticed about my mental state including memory and feeling clear and sharp, is that during bad flares when disease activity is at its worst, is when I start getting a decline in it. I leave most of it up to the fact that I`m just not feeling well physically and am extremely fatigued all the time. But sometimes, I start to worry that it could be something more, especially when my memory starts going on me and I begin forgetting about dr. appt.s and what day of the week it is, etc. I do know that for me when I am low on steroid, everything including my mind, starts slowing down. Sometimes, however, steroid is not the answer, as too much can causes similar effects on mood, memory, personality, etc. I think the thing is that our minds are just like the rest of our bodies, and there can be multiple reasons for why we get brain fog or brain fatigue. Like I said, I believe that just being really ill all the time is probably the biggest key factor in our mental and cognitive health. Fighting pain constantly can also cause us brain fatigue, as it takes a lot out of us constantly fighting and struggling through. Another thing for me is I battle with constant nausea, so this is another thing that drags me down a lot. Other things could be medication-related, either not enough of something, like steroid, or too much of something-- many of us are on sedating type meds like pain killers, antihistamines, sleeping pills, anti-depressants, muscle relaxers, and so on-- all of these meds not only slow-down the body functions and CNS, but also slows down our brain functions, causing not only physical body fatigue and exhaustion, but also mental fatigue and exhaustion. The problem only worsens the more of these meds we take, as an additive effect starts happening. I know I have heard that some people think in order to help their brain fatigue, they should start an anti-depressant or some type of mood enhancer, thinking that will help-- but these meds can only worsen the problem, if our declined mental and cognitive function has nothing to do with depression or a chemical imbalance in the brain. I know you probably already knew most of this, but just thought I would remind you and others. I find that for me, the best thing that helps my mind is good rest and sleep whenever my body tells me it needs it. Right now I am still in a bad flare (the same one I went into about 5 yrs ago now), and am still very ill and struggling with many problems because my body will not settle down. So I am basically confined to my home everyday and only able to go out and work minimal hours when I feel well enough (3 hours twice a week). I had to put my university on hold and cannot drive. So basically I am able to just rest and sleep as needed. I often find that once I have listened to what my body needs, my brain often gets some good rest also and feels somewhat refreshed afterwards. This does not always help though, just as my body fatigue often just drags on and on and comes and goes as it pleases, and sometimes, no amounts of rest or sleep helps. But for the most part, if I can take little cat naps throughout the day, it definitely helps my brain functioning. Anyways, I guess my best advice is that meds are not always the best answer for everything, and may even worsen the problem, especially if they react with and add to effects of meds you are already taking.

I do hope that you can find some solutions to your brain fog, and discuss your issues and worries with your GP and or specialist. As we know, there could always be a physical problem from the Behcets that causes our symptoms, so its always a good idea to keep an eye on it and seek help if it worsens and does not improve.

Jenna

Thanks Jenna, I'm so sorry you are still feeling so poorly. I am feeling better thank you, in the main I think due to having 3 weeks off work and I think that has prevented the flare becoming worse. I hope this means that I am starting to learn to understand my body and or the behcet??? fingers crossed. I do hope you start to feel better too. Love Jill

Hi there, I just joined this group so I'm reading every post and your post really stood out infact i had to look and check out your age lol I'm 46 and experiencing the same thing. I feel like i'm going crazy??? but I like Jenna's post it's got to be the answer all these drugs we take and all the things we have to deal with this must affect our brains and wear them down. I feel a lot better maybe i don't have Dementia after all…I forgot my address the other day???

I'm the same age as you! It's improved since I stopped work so I think it was made worse by the fatigue. There is less pressure on me now so I just do things completely in my own time, which also seems to help. I still have the odd nightmare day but I tend to have a day in when I realise I'm having one of those days, I also don't drive when I feel foggy.

Hi matey

This is possibly one of my most upsetting symptoms...it's one thing not being able to get about mobility wise but another one altogether not being able to communicate properly.

Especially for people like us who are very intelligent, vocial and sociable......it feels very cruel and realms me to crying or shouting out of frustration. Not even being able to answer the phone or deal with something difficult in case we forget or say the wrong word in place of the one we want to say. I also have times where I cannot figure out how to work very familiar items and insist they are broken, when they are not really............Prolonged stress is the worst culprit for bringing this on.

My whole equilibrium goes at these times as well....bumping into things, dropping things...even poking myself in the eyes...it is horrible.

Other people may not realise that it is as bad as you feel it is....I have tried to get my husband and others to understand what it feels like but they try to be kind about it rather than trying to understand. I must admit though that my husband does recognise it now and puts up with a lot from me, making allowances by stepping in if he feels I am really struggling. He doesn't overtake me though and in all honesty I wouldn't be very appreciative if he did ........if you know what I mean lol !!

My Neurologist says it is the Nervous System causing mine, along with sleep deprivation from Apnea and not sleeping and so it can also be a sign of extreme fatigue.

I now type out a timetable for the week ahead...placing in things I want to achieve and appointments etc, even planning meals etc. It enables me to look ahead and not take too much on each day so that it mounts up and overwhelms me.

It gives my memory a rest and helps my brain to organise and not miss things....I might forget to do it when I am feeling pretty o.k but when things become full on I revert back to it before it takes a hold.

Might help you too....worth a try

It's like being really drunk and unable to get your key in the front door to unlock it....only you're not drunk and although you've opened the door thousands of times you are trying to insert the key upset down, but you are convinced that's the way it goes.

That's a really interesting comment Andrea because sometimes I get inflammation in my mouth rather than separate ulcers and I feel as though I have woken up with the wrong dentures in....((I don't wear dentures but you know what I mean?)) and the person whose gums I have in my mouth is a giant sized man...?I'm sure medical students would be utterly bemused by us.

At least we speak the same language!

I tried to open my front door with my car fob…ok i got that of my chest

Perhaps we can start a new posting with list of all these so we can at least have a laugh at ourselves.

I have quite a list of them :-

Furniture polish on the hair instead of hairspray.

Cooked the fish in the dishwasher instead of putting it in the fridge

Got inside someone else's car outside the post office

The list goes on

Yes westorkshiregal you will definitely fit in here

A couple of years ago, when I was going through a very knackered period of flares merging into each other, I drove 100 yards from my house and COMPLETELY forgot where I was. It was like someone had deleted the map in my head. It was a very disorienting and scary feeling, and I thought it was the first signal of impending dementia. I was 54. Thankfully, my memory healed. It still waxes and wanes with the flares, but during my good spells my faculties still fire on all cylinders.

Top tip....I never drive now if I feel unwell, but I have the satnav on quietly at all times just to stop me absent mindedly heading off somewhere else and then having that horrible "where was I meant to be going?" Panic moment

The scariest thing for me, well it happened twice, was not recognizing where i was? that was very trippy. I kept that to myself My husband and kids were with me… I'm always sitting in the car wondering where i'm supposed to be going? I like this thread we can admit the fogginess without the guilt! It could scare people who haven't reached this level of fogginess so maybe a warning? Enter at your own risk?

Joking apart I thought this "forgetting where we are" was caused by a very high dose of gabapentin, and I hoped that it would stop on lowering/stopping that drug but it hasn't. I don't know why I joke about it because it's quite upsetting and a little scary...like I say I'm trying to find ways to prevent it but I wonder what it's caused by?

OMG I am so pleased I no that sounds terrible but I thought it was just me. I have had a MRI scan which just showed a few white spots but nothing major. Before my bd diagnosis I went to some one from the hospital the irony can't remember there title but they did memory tests on me and they were so bad that I had to go back and redo them and they were worse in the end she said it must be stress! And medication related!

Some of the funnies

Hairspray under my arms instead of deodorant after shaving ouch!

Phone in fridge

Was running late an thought hair looked a bit greasy so covered it in what I thought was dry shampoo it was leave in conditioner I looked like I'd been in the fryer.

Being out with my sister and someone chatting away to me an I can see my sis laughing as she said I had that blank look on my face and knew I didn't have a clue who it was, it was my brothers x girlfriend of 5 years who I knew really well! That happens constantly.

Threw my work bag in the dustbin and walked down the road with the rubbish! Yuk

The list is endless and although it terrifies me I try to laugh about it as much as poss as over thinking it makes it worse I've even got a wrist strap on my buggy as I was terrified I would forget my baby girl at one point!

I make lists the moment I do something, lots of people have spare keys and then what ever happens happens xx

Hey AK13 I had MRI's done on my brain after I had a seizure last year and they found white spots they called lesions? Since then I've been really extra foggy!!!

Hi there

I stumbled across this post which kinda interested me as I think my memory has been a bit weird lately.. I don't know, maybe I'm just being silly, or not concentrating or what?

But there are times when I do something, but I can't remember if I did it or not a few minutes later, or I went to do something and when I get there I forget what I was supposed to do. I also do a part time course and at the end of the day we have to write a daily diary of what we done on that day, I tried hard to think what I did that morning but I had to ask my classmate what we did and that was embarrassing! Another time I had to put a specific amount of money in an envelope (with other peoples money in it) then did something else for less than a minute, came back to the envelope and couldn't remember if I put the money in! So I had to count it all again asking the amounts from other people. And found out I did actually put the money in. Or my mum tells me to do something, then I'm on my way to do it, but then have to ask her again what she wanted me to do! This only happens sometimes though.

Can this type of memory loss (if that is what it is for me) be related to having headaches?

I'm going back to the Rheumatologist on December 1st, so I might tell him about it then. I haven't been diagnosed with BD yet, it's just suspected. Plus hes going to discuss my blood test results.

Take care