hello
just wondering if anyone else has seen a neurologist for problems with brain functioning? i am having real problems with that and severe headaches and can’t manage normal life. Know its not organic - scans and bloods OK - psychologist and medics reckon there’s a mood component involved but some situations look more neurological, see it as a chicken and egg situation. Tried for a year to go back to work - bit shambolic, that experience LOL
the chemobrain word is being used, which i thought professionals might be somewhat dismissive of.
comments gratefully accepted - not able to reseach because i can’t process what i read very well
thanks
mon
I am sorry to read your posting and also grateful to you for posting. Sometimes I feel like I’m the only one experiencing this.
I too suffer from severe headaches. I’m keeping a chart, and have had only 3 days in the last month where I haven’t had either a headache needing paracetamol or a severe headache needing codeine.
I haven’t been able to return to work either. I can’t hold information in my head like I used to and that is pretty much essential for the work I used to do. Some days I’m better than others. If I have a bad headache I can’t do much at all. When I can get things done (and I do look up a lot of research still) it’s like wading through treacle. It’s like there’s constantly some dark fog in my brain.
I also suffer from fatigue still - is that something you have too?
As for mood, well if you can’t function properly it does make you feel low. As I said to my GP it’s not a motivation problem, I want to do more but can’t.
I haven’t been getting anywhere with any of this. Endless blood tests, brain scan - all clear. One Onc said he thought it was the tamoxifen. I’ve also been told it’s still recovery even though I’m 18 months post treatment. I’ve even tried acupuncture but it didn’t help.
The only thing I have found out is that my hormones are going up and down like mad. I wonder if that might be a factor for you too? Elinda xx
Daisyleaf it sounds awful for you. I know a lot of us suffer from ‘chemobrain’ and sometimes it goes on long after chemo but what you are describing sounds a lot worse than that. Has your onc/gp suggested that you give the aromasin (I think that is what you are taking) a rest for a couple of months and see if it makes a difference?
Dawn
xx
Really sorry to hear how badly you are struggling with this. I don’t get headaches, but I certainly have found my memory is shocking and processing complicated information is difficult. I can have long conversations and agree a plan of action - the next day I can’t remember a thing about it. I’m sure it’s chemo brain in my case as it hasn’t got much better since the chemo stopped, and I had a year before starting hormonals - so it isn’t that. Do hope you can get to the bottom of it.
fintyx
hello
thanks to you all for responding
Elinda, yes i get the fatigue too and its unpredictable. sometimes i can walk for a couple of hours and other days a bath is an achievement!
Hormones are a funny one, i had an ooph last year and am on aromasin - have SEs from them in joints etc, but only recently changed from letrozole, and actually this stuff predates the AIs. I was OK on tamoxifen for 5 years.
For me too, being able to process information, negotiate and make decisions is central to my job, so i was scared of how i functioned at work and would be scared to go back - I’m not trustworthy!
Dawn and Finty, i’m sure its related to the chemo, it definitely dates from then.
its very frustrating though
xx
Hi
I just wanted to thank you for posting your problem, I haven’t had bad headaches but i am suffering with the memory loss and processing information. I finished work today for the summer(work in a school) and i’m sooo relieved, I went back 2 weeks after finishing radiotherapy (last Nov) and thought getting back into ‘normal’ life would help. First of all it was ok because people don’t expect you to do much but now it’s like last year never happened. I struggle with remembering how to do simple tasks and keeping on task of what i’ve done, and the more i feel frustrated about not remembering the lower i feel. I work with another lady who helped to cover my absence and she’s learnt loads while i’ve been away i just feel like a spare part!
Darcyb x
I am getting close to the end of remission and I have problems remembering some words and phrases; also the names of people like famous actors, films and TV programmes I have seen recently. I don’t think it is helped by the fact I was rendered post menopausal by all this. I take Ginko Biloba every day, and I think it helps a bit, but sometimes my memory isn’t great - frustrating as I was renowned for my ability to remember stuff, friends used to say they couldn’t believe how great my memory was!
I do a lot of writing in my job. Before BC it was very rare for me to have to consult a dictionary or thesaurus, now I have a whole shelf of them above my desk.
Bumping this up, in case anyone else can advise.
Hello, just an update for those who responded and anyone in a similar position - I have recently upped my dose of Gabapentin to 600mgs three times a day and the effect after 4 days is astounding me (and my family). I have gone from constant severe headaches to a few milder ones that I can manage with paracetamol and ibuprofen and have so much energy that the house is shining! My GP reckons that the success of Gabapentin indicates that the pain is neuropathic in origin.
After so many months of pain and fatigue it is fantastic. Thinking is a bit more difficult I use the wrong words and phrases constantly and misread things so i have to keep going over what I’m reading,can’t process info at all well, but am waiting for a neurologist appointment and hopefully will get some help from that. As this is long term treatment I am definitely going for ill health retirement - I dread to think of the confusion I could cause.
Hope you are all doing OK
mon xx
This is all very interesting. I’ve been on ‘hormonals’(tamox/anast)for seven years.Prior to that had 12 rounds of chemo. At first I expected my ‘chemobrain’ to gradually get sharper as I recovered but I still experience huge memory loss and that feeling there is a blob of porridge where a functioning brain used to be.It can be frightening at times to try to make my brain function and it won’t.I find myself retreating from situations at work where my brain might be challenged or socially where I have to remember peoples names.
At work the youngsters think I’m a mad old lady. My boss sometimes can’t quite believe how stupid I can be. And neither can I.
None of these symptoms is so obvious that I could be said to be unwell. I have tried to explain, without trying to make it sound like an excuse, that I take pills which mess with my hormones but neither of my Managers (two young men in their thirties)take it seriously and we all end up making 'mad old lady’jokes (I’m only 55). Luckily I don’t have the kind of job where it matters hugely if I have a blank and I have compensated by writing notes for everything.
It’s so interesting to read of others having similar (and some much more pronounced) problems.
Some rather alarming statements have ben made about Gabapentin and its manufacturers, namely that the manufacturers have promoted the drug as a treatment for conditions that is hasn’t been shown to work for. (Source: Wikipedia, so not deep and meaningful research on my part.)
I know gabapentin isn’t without issues, and SEs list is a worry, but I know its used in pain clinics and its been the one thing thats got rid of headaches which really had me laid low, so I have to go with it.
it’s a bummer that we have to take stuff that messes with so much of our brains and bodies but can only work through it and try and get our lives (tho different) back.
Chalee, hope your managers wise up, are there ways you can adapt your work? xx
take care chaps x mon