Does anyone else feel like this - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Does anyone else feel like this

Molly100 profile image

Sometimes I feel as if I am losing my mind. I cannot string a sentence together or the wrong word comes out of my mouth. My husband says think about what I am going to say before I say it, however I do and from the point of thinking it in my brain to it getting to my mouth it comes out completely different. Even when I type something it can come out differently to what I thought I was typing. So I have to read it several times to make sure it is ok. Even when I read something I read it in the wrong way and again have to read it several times over to actually understand what I am reading. I know I am not stupid as I was an Administrator in a busy Nursing Home. I still work there and recently I was asked to take on the job again, however after 3 months I feel I cannot cope as the stress has caused my memory problems and speach problems to worsen. So much so that I have decided my health is the most important thing and I am going back to my two days on reception which is very frustrating. I read that I should write everything down but I am not consistent with this approach as I forget to write it down or think 'oh I will remember that' and then don't. I must drive my husband up the wall. The other day he asked me if I had my mobile phone, i said 'of course I have it is in my bag' He walked passed me up the stairs and came back with my phone! The annoying thing is I would have argued with him that it was in my bag. I just do not know how to handle this part of my APS. I feel like people must think I am mad, I say the wrong words all the time, I know this because of the way people look at me! I wish i could have a label on me saying i am not stupid I just have APS.

Sorry this is so long I just needed to let of steam really. :)

35 Replies

Hi Molly. I go through periods when my brain is complete mush. I can't find words, my grammar breaks down, I type something different to what I intended, my short-term memory is shot, I forget things, I get very confused, etc. I really hate it and it gets me down. Sometimes it's an indication that my INR has fallen (I need to be >2.8) but sometimes not - I am now in perimenopause and am getting more frequent episodes.

I recently saw an art class advertised, taking place just up the road, and thought I'd go along. Then when I doubled checked the ad (double checking has to occur these days!) I saw it is for those with dementia. But, as my husband only half joked, I could turn up during one of my 'episodes' and no one would tell the difference!

Molly100 profile image
Molly100 in reply to MrsMouseSJ

Hi MrsMouseSj

Ha I had to laugh at the last bit. My husband constantly compares me to someone with dementia also my mum died last year and she had had dementia for 8 years. But you have to laugh I guess!

I too am in the Menopause and I think maybe this is making me even worse at mo even though my INR is actually just over 4.5 at moment. I get my husband to read most things before I commit to anything. Sometimes I really do think I am mad. Especially at work, I wonder if other people notice that I am like it and are just too polite to say anything. I walked out of the house, shut the door and then realised I did not even have my keys on me, so had to ring my husband to come home and let me back in. On several occasions I have come back from work and the house alarm has been on and I just cannot remember the number even though it is the same number as my mobile pin, I have to ring my husband and the first thing he says is 'its the same number as your mobile' ! Mean while the alarm is blaring away.

But the memory is just not there if that makes sense. It is no good someone saying can you not just retrace your steps, as it is as if it has not happened at all. It can be quite scary at times.

MrsMouseSJ profile image
MrsMouseSJ in reply to Molly100

It does make sense. And smiled at your examples - at least it's not just me!

ELlieRL profile image
ELlieRL in reply to Molly100

I find it interesting that everyone here blames their problems on APS, I also have APS which wasn't diagnosed until after I suffered a significant stroke. So, in my case, I blame all my problems on my stroke(brain injury). Funny enough, many of my friends, and acquaintances who are around my age, comment that they haven't had a brain injury, to blame it on so they wonder what their excuse is. Which made me realize that some of my issues might be caused as much by hormonal changes as by my change in lifestyle brought on by my stroke, I'll never know now, since I will be unable to separate the two events.

Lure2 profile image
Lure2 in reply to ELlieRL

Hi Ellie,

We can not see what you wrote earlier as you say it is gone (?)

I now hope you have a Specialist of autoimmun illnesses and a proper anticoagulationdrug to thin your blood at a steady and high INR (3.5 - 4.0) so you will not have neurological symptoms as TIAs or mini-strokes. What INR do you have at present and does it work? If you are on Warfarin that is.

We must always try to thin our blood! The first and most important thing for us with HS. It can take some time after a stroke to get back to a normal life.

I do not know what age you have but i do not understand what you mean with ... "they have not had a brain injury to blaim it on so they wonder what their excuse is"..... What to blaim on and what excuse?

Have you read "Sticky Blood Explained" by Kay Thackray. A good book for relatives and also friends to understand how it is to live with this illness and for us also of course.

Best wishes from Kerstin in Stockholm

Hi Molly

I second the APS badge - "i am not stupid I just have APS." I think they should sell them on the charity website - they would make a heap of money. lol. :)

I struggle with APS being an almost "invisible disease"; it really debilitates me and I hate having people see me with a walking stick or aid and then have cognitive problems as well.

Join the club

I am the same in some ways like wrong things come out if my mouth or regularly I repeat the first word then put my hand over my mouth then try again to say what I want.I do try putting the iron on the fridge and can't remember what I did yesterday so I write things on my diary.But I am not convinced it's all to do with my APS as when I go on the Fibromyalgia forum as I have that too there seems to be alot of people with the same problem.

I have fibromyalgia and tested positive twice for lupas anticoagulant and the brain fog aka fibro fog is real. Real frustrating

Well does anyone live in eastbourne who wants to meet for a coffee? If we can remember!!!!

It is good to know I am not the only one.

i must just say though my husband is great really and he has read up on APS and knows all about it. although it did take a lot of convincing him that I did not have dementia. We have only been together 7 years and he got me the appoinment at London Bridge so that I could properly be diagnosed about 4 years ago. It must just get so frustrating living with us all for our other halves. (not sure I spelt that right) lol. My husband is a very logical organised person lol which is probably great for me.

Hi there. Your symptoms sound very much like my own. It's so hard to get people to understand that it's the condition causing these things and that you are not mad! I muddle words, I get half way through a sentence and forget what I'm even talking about, or like you, the wrong word comes out altogether! For us, this is just who we are now, for others were a hinderence or feel we can't be trusted! I totally understand how frustrating it is, but there's nothing we can do other than take our meds and hope that at least one person 'gets us'. At least here on the site there's always someone to listen who knows what you are going through!

Sending gentle hugs your way x

Hi Molly,

I wonder who is your Specialist Doctor of Hughes Syndrome and if he or she understands that we must be on an anticoagulation drug at a steady and also high enough INR.

I also wonder if you selftest as that is an easier way to keep the numbers of INR at the right Numbers. You have to test your blood rather often and I wonder how often you do that.

We all have those problems but better when we have thinned our very thick blood.

Best wishes from Kerstin in Stockholm

Molly100 profile image
Molly100 in reply to Lure2

Hi Lure

I have my INR tested every 4 weeks unless it is way off. It is 4.5 at mo. The Nurse at the surgery is very good. Although it did take a bit of convincing that I wanted it over 2.5. I am so glad for this site and glad I posted this particular problem as it does get me down quite alot.

Lure2 profile image
Lure2 in reply to Molly100

Hi Molly,

If you do not also selftest at home I think that a veintest every 4 week is too seldom to be able to keep a close eye on the movement of the iNR.

That can partly be the answer of your bad memory. Your INR should be followed more closely. I test every second day at home and many here with a good result test every third day.

Can you selftest or change to LMW Heparin perhaps?


Molly100 profile image
Molly100 in reply to Lure2

Hi Kirstin

It is not a vein test every 4 weeks it is a finger prick. It was about 2-3 weeks depending on what level it was but now it is every 4 weeks although it has been pretty stable at the moment. If I self test that would mean buying a machine would it not? Are there different ones? If so which are best? Sometimes I get the nurse at work to test me if I feel it is out at all.

I have been on warfarin since the 1990s and so would be reticent to change now, it would scare me too much I think.

Lure2 profile image
Lure2 in reply to Molly100

A fingerprick test can give another reading than a veintest. For me it is a difference from my CoaguChek XS to the veintest at the hospital with a difference of an INR of around 0,8.

The fingerprick test gives a higher reading than the veintest but it is the veintest that counts.

You perhaps have the same readings between the two alternatives but you must find that out.

When I started to selftest I had to go to the hospital and doubletest for half a year to see if there were always the same difference.

I do not know if you are Lupus Anticoagulant and in that case there could perhaps be a difference.

You should be tested in the vein at a hospital lab or approved lab as they have to send the blood very quickly.


O hunny , this is our normal , I have times usually worse when coming up to my period , it's so frustrating but I have just learnt to deal with it but I can hide it quite well at work and I self test every other day to make sure INR high enough xx

Agree with all that has been said. I have one daughter who gets it and one who corrects all my mistakes! My husband just makes atmosphere or corrects me when I am wrong. It is not confidence building!

Nice to know others are the same! Ann

I put silly things in the fridge too

when I am tired,the sounds that come out of my mouth are not even real words!

often call things the flmlmlm

had coffee with old school friend the other day and announced that I really need to tidy my cardigan!

she burst out laughing

I had meant garden😐

...I put my house keys in the freezer last night...I completely get it. When I'm even more tired than usual, I do ridiculous things! Laugh for sure and take comfort that there are loads of us wondering around muttering to ourselves about why we're there and if we're supposed to be doing something 😆😆😆

Charlie xx

Lind8 profile image
Lind8 in reply to Charliebear68

Phew so nice to know I'm not bonkers. I've even driven to the shops then got the bus home as I forgot I'd gone in the car 😂. Think we have to find humour in it somehow. My husband doesn't even comment when I say random words now as he's so used to them & kinda knows what I'm trying to say.. it's just complete strangers who look at me really oddly ... all my friends text if they want me to do anything so at least I can go back over texts to remember, they know if they just speak to me I will forget. I wonder what part of APS causes it.

Ha ha welcome to my world. I have been hauled into office by bosses. As I have tourettes! Apparently I'm blunt and hurtful. I am honest and always have been. But say things that sound wrong. I'm forever apologising to my colleagues. But there great about it. The bosses not so much.i don't think it's my aps. I think it's the strokes that have made me tactless. Forget words and sentences come out wrong. I am better with 8 hrs sleep. And a nap in afternoon. Hope this helps.

Lure2 profile image
Lure2 in reply to molly1969

Yes that helps also but I am convinced it is a common symptom of Hughes Syndrome that makes you feel like this.

It helps with rest, less stress and an INR in the right range all the time if you use Warfarin that is.

If you have had a full blown stroke it will take some time.


I feel the same, its reassuring to know that there are people out there that suffer the same, annoying thing is that its not visible illness so no one knows and that makes me feel sillier sometimes when I say or type the wrong thing

Please be assured you are most definitely alone in this. Even if my INR is well within limits I still do daft things. I have learned to laugh at myself sometimes otherwise I would cry! It can be very embarrassing at times though.

Oh molly

I am with you, sometimes I start a sentence and stop and don't know what I was even talking about to start with. I lose words and also started saying words wrong. I used to write reports and investigate investment complaints and advice given to people and Immy grammar, spelling and quality (heavily controlled) was always 100%. Now I read things wrong and I use the right word but spelled wrong (I just had to correct the word from write to right 😬). Sometimes I make no sense at all.

Honestly feels like dementia at times 😭.

Hope you feel better soon

L x

after reading all these comments, I'm so glad you all make me feel normal, ive had problems, with this but, I explain to people I have a problem and the seem to accept that. I laugh at my self,I stop midsentance,cant remember names,or even change names of items, some days are worse than others. Is this what is explained as brainfog.

Lure2 profile image
Lure2 in reply to dawnzy

Hi dawnzy,

I wrote to you 3 months ago and understood that you were on Warfarin with an INR between 2.5 - 3.5.

You have got a Rheumatologist who I hope is specialized in Hughes Syndrome. I wonder why he has not put you on the higher INR-range of at least 3.5 - 4.0 advised so often by prof Hughes. I feel best on an INR of 4.0 like most of us.

I also wonder how often you test your INR? In the vein at a lab or fingerprick by selftesting? I selftest every second day.

Why I ask you these questions is because many of us have found that when we are steady and high enough with the INR we feel much better and the symptoms almost disappear. It is difficult for us to be on Warfarin and there are also other alternatives liked LMW Heparin.

When having APS and a too low INR is like having Diabetes and only take half of the stipulated dose of Insulin.

Best wishes from Kerstin in Stockholm

dawnzy profile image
dawnzy in reply to Lure2

hi Kerstin,

my inr range is still the same, althought I went a bit haywire and it dropped,went back on enocaprin injections for six weeks while it got sorted, my aps specialist knows about Hughes I saw them this week they are happy but don't understand my blip with inr drop but are closely monitoring it. I get finger prick checked every 3 weeks currently, and I'm seeing heamatologist on Monday because of the blip the realy don't understand why my inr dropped, but I've returned to work, and although the brain fog has become a part of my life, the have been very supportive, ive explained that if I say the wrong thing to question IT and it seems to be working, they also laugh with me when I realise I said something stupid, good team building strategy.

Lure2 profile image
Lure2 in reply to dawnzy

We should always take bloodtest in the VEIN ALSO which is said to be more reliable. Also see the difference between the veintest and the fingerprick test.

INR can go up and down all the time. In one day my INR can drop 1.0 with bad luck and for a reason that I do not always know.

You should also be chequed in the vein and more often in the finger than every 2 - 3 week!

There can be a difference between the two tests and it may be possible that in fact you have a lower INR than the fingerprick test shows. That you have to find out!!

I can not understand that your Specialist will allow this and that is why I am not certain he is specialized in Hughes Syndrome.

There are a lot of Rheumatologists that are not specialized in Hughes Syndrome but we need such a Doctor. That is why I am nagging about it because I know how important it is for us. Hope you will do something about it. Hope you understand what I am trying to say.


Yes struggle with words all the time. Sometimes my tongue and salva gets in the way of my brain.

Thanks everyone for all your comments. It has really helped me out in my hour of need. I really do think I am not normal sometimes. So great to see I am not alone.

All the time I can’t stand it. It’s embarrassing and frustrating

Lol ok now I’m rethinking getting mine I needed that made me smile

Hi , don’t worry this normal . I have good days and bad . Sometimes my limbs don’t want to work . It makes you feel inadequate. The way I deal with it is , check all typing before you send it . If you forget someone don’t worry it will come to you eventually . If I forget say a celebrity name I google what I can remember and then usually it pops up there . My speech is part of who I am now , just explain to people you have a disease that affects your speech , nobody is really bothered only you . You are still you but dealing with APS as well . Don’t feel bad and upset just learn to find your level and you will be fine xx

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