Where has my concentration gone? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Where has my concentration gone?

Glitterwitch profile image
31 Replies

I seem to be really struggling the last couple of weeks with my concentration levels. My short term memory is also a bit of a mess. I can walk into a room and then completely forget what I went there for! My INR is where it should be, so not sure why this is happening. Normally when I am feeling a bit "off", I get my knitting out and forget all about my problems. But this week I can't even seem to manage that. My latest project has been undone 6 times in the last 2 days - think I will put it away until I am feeling better!

There is a positive side to this - I keep forgetting to do the ironing!!!

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Glitterwitch profile image
Glitterwitch
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31 Replies
jessielou profile image
jessielou

Hi hon

I know how you feel, although my Inr is through the floor at the moment, my favourite thing to relax is read, sadly I lose what I've read and end up re-reading over n over again!

I forget what I've gone into a room for too!

I pay my daughter to do the ironing and she forgets to do it! Convenient, it saves me forgetting!! :-) :-)

Take care gentle hugs love Sheena xxxx :-) :-) :-)

Glitterwitch profile image
Glitterwitch in reply to jessielou

Thanks for that - it is good to feel that I am not alone. So hard to explain the issue to others as I don't look or appear to be ill.

xxx

jessielou profile image
jessielou

Hi hon,

You're definitely not alone, I've long since given up on explaining, I just tell em I might look great but I feel sh##!!!

If they don't like, pfft!!! :-)

Big gentle hugs love Sheena xxxx :-) :-) :-)

Manofmendip profile image
Manofmendip

Hi

I used to lose my concentration a lot when I was on Warfarin but my head is much clearer since I moved over to Fragmin.

Best wishes.

Dave xx

Glitterwitch profile image
Glitterwitch in reply to Manofmendip

Hmm thats interesting - thanks for that.

in reply to Manofmendip

I am actually still really struggling, dedpite the Fragmin....

Manofmendip profile image
Manofmendip in reply to

Hi Lissylou

That's rough then, all then discomfort of injections and no benefit. :-(

Dave

in reply to Manofmendip

For me the benefit is the massive drop in headaches/migraine - i'd say i get 95% less than i had pre-Fragmin. That also means i get less visual disturbance so less likely to trip/fall. I am a bit of a klutz!

Manofmendip profile image
Manofmendip in reply to

That's good then. I am so much better on Fragmin than Warfarin in many ways. Warfarin worked well for me for 7 years than seemed to not be much good for the next 2 years but going back onto Fragmin, a different world.

Lesley_D profile image
Lesley_D in reply to Manofmendip

I have to inject when my INR is 3 or below, I normally use my tummy, but have hard lumps and bruises that stay for weeks on end - any tips!

Smiles

Lesley

X

in reply to Lesley_D

Sorry Lesley, i use my tum too but have no lumps. I try to avoid areas that i've injected before to stop any build up or trauma. Injecting slowly seems to help minimise any bruising.

Manofmendip profile image
Manofmendip in reply to

Hi Lesley

I'm like you, bruises and hard lumps; it seems for some of us that is the price we have to pay to keep reasonably well. :-(

Best wishes.

Dave

sharonap profile image
sharonap

Ive been like that from the begining but noticed recently its getting worst. I cannot read anymore unless theres only two characters otherwise I get confused and have to keep re-reading which is annoying. My daughter complains as when shes talking i turn the tv off as i cannot concentrate on both things. I forgot how to get out the bath a couple weeks ago hence vist to neurologist, so no more baths for me....xx

Kernow profile image
Kernow

snap! I have problems like you too sometimes. I can't remember names, how to do things and studying is 'out the window'. Until I think clearer I just lie low, watch tv, read and relax (a really hard thing to do for someone who is on the go all the time!)

Glitterwitch profile image
Glitterwitch in reply to Kernow

At least we are not alone - it is comforting to know that others have the same problems.

debatwistow profile image
debatwistow

Hi, I'm on warfarin for APS and blood clots on the brain about 3 years ago. Over the past couple of years my memory, concentration & ability to learn new things has got worse causing me to have a bad time at work. I am losing a lot of confidence as I put it down to getting older (I'm 50). Recently, I have done some research on brain injury & APS and some people are reporting 'cognitive deficiency'. I'm still looking into this at the moment but it might be worth doing a bit of research youself & approaching your GP for a referal (not sure if anything is available on the NHS though).

sharonap profile image
sharonap in reply to debatwistow

hi, I went to see my GP regarding these problems and had an appointment to see neurologist within 3 weeks, she has refered me to a neuro-psycologist to have further tests done and another MRI. So worth going to see GP.

Glitterwitch profile image
Glitterwitch in reply to sharonap

Sounds like I need to have a chat with my GP regarding this. Will certainly do some research as well - always worth knowing what you want when visiting the GP !

Lesley_D profile image
Lesley_D in reply to debatwistow

Hi, I haven't had clots to the brain that I know of, but recently my concentration, speech .... Ie I say totally wrong words, ie call a cupboard an Ron board is my latest ... Anyhow sorry I digress, oh ... Haha would you believe it, I have forgotten what I wanted to say :-(

Nat1969 profile image
Nat1969

I’m really forgetful, have no short-term memory and find it very hard to concentrate. I jokingly say I’ve “caught Alzheimer’s” to my family and friends, but it actually has me worried. I’ve mentioned it to both my GP and at Clinic, but they don’t seem overly worried. I was made redundant a little while ago and I’m currently having interviews for a new position. However, confidence is low and I worry that I’ll be crap if I get a new job as my ability to handle “things” just isn’t there. I read my references and they were excellent, but I feel like they’re talking about another me – not the one I am now certainly.

I have Lupus and APS, but I don’t think my APS is bad. I’m certainly not on any Warfarin or anything like that. And I have no idea what my INR is. I don’t even know what a good/bad/normal INR is? I have my Clinic appointment next week so I’m going to ask and also mention again my rubbish memory and concentration.

Glitterwitch profile image
Glitterwitch in reply to Nat1969

I took early retirement a few years ago, and 2 years ago became self employed and set up a small business from home. A month after I started I got my first blood clot and then things went from bad to worse for 18 months. Blood now seems to be stable and so I am trying to re-launch my business which has floundered along while I have been unwell.

Problem is with concentration levels and memory at an all time low, I am struggling to get the business going. Friends & family dont understand the problems as I was always a lively dynamic sort of person who got things done. Now I cant remember what I have to do!

Heyho, just have to adapt to a new way of doing things - lots of lists and reminders everywhere!

Nat1969 profile image
Nat1969 in reply to Glitterwitch

My friend keeps telling me I'll be fine once I'm back in work - and I'm hoping I will be. But I often also find people don't understand. They look at you and don't see anything wrong - unless you're having a bad time and are in bed!!! I have a Blue Badge but I sometimes feel "guilty" using it - even though I need it. I think people look at me and don't "see anthing wrong" when actually I could be feeling crappy.

Glitterwitch profile image
Glitterwitch in reply to Nat1969

Yes, I know what you mean. If you look ok are are not obviously in pain then people assume you are ok. That is the bit I am finding hardest to cope with. I can accept what I have and get on with life, but it is frustrating when others expect things of me that I can no longer do.

I will just have to firmly educate them!

Lesley_D profile image
Lesley_D in reply to Nat1969

Nat, normal INR is .9 to 1 and is normally monitored if on warfarin, as ths thins the blood and INR Us the. Monitor to check how thin ..... I tell all my friends that Al is my new best friend .. They say Al who, yup you guessed I say Al Zimer :-)

MaryF profile image
MaryFAdministrator

I was going to write something helpful and profound and then... I forgot all about it etc etc. Mary F x

Nat1969 profile image
Nat1969

Sorry ... who are you people?!?!?!?!?!?!?!?!?!?

Glitterwitch profile image
Glitterwitch

Wow, I have obviously touched on a subject that affects a lot of us. Thank you all so much for your comments, support and humour!

putterbunneh profile image
putterbunneh

I went to the Scutari memory clinic at St Thoms' for a year. It was a huge help. Pre-Warfarin, I was having a steady increase in tiny spots of brain damage. With Warfarin, the deterioration stopped. The clinic staff at Scutari helped me a lot and both my confidence and memory/concentration improved no end. I even went up 4points on the IQ test! They also taught me 'tricks' for remembering. After improving, I realised some of my memory/concentration problems had been caused by anxiety about the possibility of dementia. In these days when Alzheimers patients struggle to get appropriate NHS services, I felt blessed to have benefitted from such wonderful help from Scutari.

Glitterwitch profile image
Glitterwitch in reply to putterbunneh

That sounds really good. I will mention it at my next appointment at StThomas' and see if that gets me anywhere. Thanks for taking the trouble to reply. xx

putterbunneh profile image
putterbunneh

Good luck. I hope that works out well for you.

Glitterwitch profile image
Glitterwitch in reply to putterbunneh

Appointment isn't until March - have written it down and put with appointment letter so I don't forget to mention my memory problems! Will let you all know what happens.

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