Sticky Blood-Hughes Syndrome Support

What to do when memory loss is getting worse ?

Does anyone have something they could suggest for me or that has worked for them to help with memory loss? Mine is getting worse, my MRI always shows normal, but my brain is not working. I realized it when I have now forgot what I bought my kids for christmas until I went back and looked at my list. Then a dr was asking me about my sons benchmarks as a baby and his birth weight and height- I could not remember any of it. I feel like sometimes this is interfering with my job and I am starting to get scared. Any suggestions or things I should be asking my dr to be doing? Thanks for your help!!

17 Replies

Don't know any answers for you, but I suffer exactly the same, so if you get any answers please let me know.


Some great tips, thanx very much.


Snap I'm having the same problem and it affects my work too i use my calendar for reminders to pop up it helps a bit.People tell me how to do things and i take notes but when i look back at my notes I can't remember what they mean.I want my memory problems properly statemented so that work have to make reasonable adjustments.


Wow! I too have experienced the same thing. In fact, I recently had an episode of accute memory loss in which I completely blancked on some information I should have know. First time that happened. But i have had consistent problems with memory for some time now. I too just had a normal MRI & MRA &EEG.

So if our tests are always normal, then what is the mechanism at play causing these cognitive problems?


I do feel for you.

My memory was getting worse, I cried every day really sobbing because I thought I would never see my children grow up,

I know stress makes it worse, tireness, dehydration, ahlcohol, I am now on warfarin so memory had improved a bit, when INR is about 3.5

I no longer have the fog, but do have short term mememory loss and concentation problems. I have a couple of really good friends who I can talk to about it, It also helps to have this site Its good to talk.

I have put on antidepressents which I think almost saved my life. I have councelling which helps, but most of all my Husband comes with me so he understands better what I am going through,ofcouse its not easy for him either

Perhaps one day they will find a better treatment or even a cure,

, I try to inform as many people as possible about this horrible condition. so they get diagnosed quicker, I agree with all the above, but its still scarey.

ps spelling wasn't good before

Love Karen


I am actually facing this. I had to force myself to eat and I can't remember things, alot of things right now


On top of the above symptoms. I no longer remember

To eat. I no longer feel any hunger pangs. I have gone

For a week without eating when my wife was

Out of town. Iam a mail 5'10" down from 150 to 139.

My wife now texts me and I have to drop

What Iam doing and find something to eat. HELP


I am also suffering a recurrance of short term memory loss over the past 12 months, despite keeping my INR around 4.0 as recommended by Prof Hughes.


Hey Sguye I know what you mean, I used to always be hungry but that has been switched off. I've given up work now as I just couldn't remember how to do my job on a day to day basis. I too forget things about my children and forget my own date of birth. I carry a "memory" book with all my important information and what I need to do for the day. I also live in a close knit community so if I do venture out alone people bring me home. But mostly I don't go anywhere alone, I'm really too scared to leave my chair if alone (I forgot how to dress myself after using the toilet once, fortunately at home). I couldn't bear for that to happen again.

Yet the doctors tell me there is no "evidence" of this brain function problem in me - I do have lesions on my MRI - but they lost the images so they have not been examined they have just seen the report. 10 days on clexane and virtually every symptom disappeared - so they took me off clexane! HELP indeed

Love Sharon x


Hi all i can answer this one i went to a memory clinic and saw a specialist they did a brain scan and saw some plauqe on the brain but no shrinkage thank god i was DX with Mild Cognitive Impairment now i know i am not going mad i have white boards everywhere and can't go out alone and have to label things and write down everything so ask you G.P to refer you it will be in the Mental Health Health part of the Hospital but don't worry good luck x


Sorry to hear about your Memory Loss. I though I was getting alzheimer's, however my Memory Loss is caused by my migraines. My MRI showed up 10/12 white legions on my brain. I find it useful to write things down and I too put reminders in my phone calendar.

Hope this helps.


It is a very common symptom I understand it is due to the way the disease affects the blood flow in the brain.

I did get some help from the rheumatology occupational therapist and she explained about how the tiredness makes the brain struggle and pacing ourself, also about memory aids like diary, noticeboard etc.

If our brain is not working properly everything will seem more difficult and make you tired.

There is also anxiety, when I am under pressure everything seems much more difficult and my brain seems to shut down.

I explained to close friends how I can't manage too well when a lot of people are talking at once or in busy places, so cut me some slack especially if I seem rude and say something out of context, its because I am struggling to keep up with what they are all saying.

Depression will also cause memory problems so if you feel down talk to someone about that.


Yep, my MRIs show normal, but I know that my memory has been going. Even my young son has told me so. I have had a few TIA's......what is up with this??


Hi all i am new to this community i joined today. I also have short term memory loss and it makes me feel awful sometimes, i dont remember what things are called often, simple every day things, my family laughs at me and i try to laugh with them, but deep down its not funny, i have hughes syndrome and fibromyalgia along with Oestio Athritis, im not sure if its the fibro or hughes that causes it, but its getting worse recently, maybe as someone else mentioned in a message above being anxious or stressed makes it worse, i wish each of you all the best xxx



Yes me too. If I watch a programme with adverts I often forget what I've been watching by the time the advert is over! Have discovered BT vision and watch things on I player now and they cut out the adverts much more satisfactory.

When my blood was very thin following, a clexane overdose, my memory returned so I think it is down to how thick your blood is. Obviously you can't overdose on medication to achieve this so I am back to square one, except my Consultant is increasing my dose to see if that helps.



It's such a good feeling to know you aren't alone. I've got an extremely busy lifestyle and high powered job and over the last few months I can feel that the APS is coming back (I've been 'negative for the last 5 years)...

My migraines have returned in full force, numbness periodically in my arms or feet, balance loss, light headed, tinnutus in my ears, tiredness and anxiety...

But the bit that affects me and everyone around me is my memory, which has gotten progressively worse. Initially it would cause an arguement with my husband becuase I didn't remember him telling me something... My son has ADHD and he completely plays on the fact that he knows 10 minutes after telling him to do something I will probably have forgotten... absolute nightmare...then it was having to write EVERYTHING down and put reminders in my phone so that I wouldn't do things like forget to pick my child up from school (what a horrible feeling when you do that more than once)...

And lately it's dramatically affected my work, my boss doesn't know I have APS and my memory loss, I fear, will cause me to lose my job (of which I've never been fired)... I really don't know what I'd do without my work, I love it and I'm terrified I literally just can't do the same job anymore after working so hard for 18 years to finally get into a high position like I wanted.


Hi Know what you mean about memory problems being such a blight to your life.

My Migraines and Memory problems were getting progresively worse over the years, Imigraine just made it possible for me to work most days, but my life was ruled by migraines and memory deteriation, felt like i was a heading for Dementia.

To cut a long story short, with lots of pushing from my sister ( who also has APS), went to see Prof Hughes, who put me on a diagostic trial of Heparin, this dramatically reduced the frequency and severity of my migraines, though did not effect my cognitive abilities. he then recomended Warferin for long term management of Memory and migraines, ( and all the other darling symtoms we get with this syndrome). He later prescribed Hydrocloreqine, ( sorry cant spell the word), which has dramatically improved my fatigue, and i find i can complete complex tasks again, ( which I was convinced had gone forever). i still have to manage the cognitive and fatigue issues with regular breaks, but I feel human again. Also find that I know when my blood is getting too thick before i have my blood tests , by my migraines and 'fogginess' coming back. my memory is not wonderful, but is on a good day 70% better, so alot to be grateul for.

I think you need to see a Hughes(APS) specialist to get the right treatment,

I worry that your work do not know about your disability, surely they have systems for supporting people with chronic medical conditions?, ( APS counts!)

think it would be good to explore ways you can get help to broach this with work.. The Hughes Syndrome organistion comes to mind, they are extremelly informative, and such lovely kind folk, wishing you well, and that some of this burden is taken off your shoulders. Merry Chritmas xx


You may also like...