Memory improvement on warfarin

[Elaine77c]

I was only diagnosed with Hughes syndrome a couple of months ago by a Stroke Consultant and have been on warfarin for about 5 weeks. INR going up but very slowly. One of the things I am excitedly looking forward to is improvement in my memory. I think I have had Hughes for about 20yrs (they found it in my blood in 2000 and didn't tell me) and people have always joked about my patchy memory. At the moment my INR is only 1.4 - at what INR have others noticed their memory getting better? I have always relied on Outlook etc to be my memory but social stuff like remembering emotions attached to events are just lost. They are aiming for an INR of 2.5 which I hope will be enough!

[Manofmendip]

Hello Elaine and welcome.

Firstly, I'm glad that they have diagnosed you and are treating you.

An INR of 2.5 would be the usual level for a person who has had a stroke or a heart valve replacement but who did not have Hughes Syndrome. Most patients who have Hughes syndrome usually need a higher INR than 2.5 (3.5 - 4.0) in order to feel reasonable, with their day to day symptoms minimised. When I was on Warfarin, I am now on Heparin injections, I certainly found that my symptoms returned if my INR dropped below about 3.3 and below 3.0 I was struggling to function; with poor memory, migraines, problems with getting words in the correct order when speaking etc.

You would probably benefit from seeing a Hughes Syndrome savvy consultant and Kate at the Hughes Syndrome Foundation should be able to point you in the right direction. Where are you based?

Best wishes.

Dave

[Elaine77c in reply to Manofmendip]

Hi Dave

I am in Bristol and they have referred me to a Rheumatologist who I hope may be good with general auto-immune disorders, if not the Min in Bath has a 'Connective Tissue Team' who cover antiphospholipid syndrome. I looked at a lot of journal articles which also said that the INR should be between 3-4 but when I asked the Warfarin Clinic they said they would aim for 2.5. As I am nowhere near that yet I thought that this would be a battle I would take up when I get there, hopefully with the support of the Rheumatologist. I am also on drugs to stop migraines - still get some visual disturbance but less since the topiramate - never really got the pain - just the loss of vision so could still carry on regardless as long as not driving at the time - frequently been in meetings where I couldn't actually see the faces of the people around me but could still contribute!

With the memory thing - I assume it is only new memories you can generate - you don't suddenly remember the things you've already forgotten do you? There are a couple of events that my family swear I was at that I have absolutely no recollection of....

Thanks

Elaine

[Manofmendip in reply to Elaine77c]

Hi Elaine

So you are in my part of the country then, I'm in Midsomer Norton.

Several of us did meet back in October with a view to setting up a Bristol & Bath Group and we must meet again to really start the group. The Min Hospital in Bath were interested in giving us meeting facilities and I will try to pursue that with them.

I see Prof Hughes, privately, in London every 6 - 12 months but I have also, recently, seen Prof McHugh at the Min Hospital.

I will send a private message to the Bristol/Bath members about the next meeting and I will copy you in on it.

Best wishes.

Dave

[Hidden in reply to Elaine77c]

Hi Elaine

My memory is still quite poor despite having been on Fragmin since December which dramatically improved headaches. I get days when i cannot remember "nouns". By that i mean it could be a person, place or thing! I do find that these missed memories can pop up days later but at the time the memory is a complete blank as if it never existed. Prof Hughes suggests the longer i am on heparin, the easier this should become.

Hope your Rheumy appointment goes well, i am also on a waiting list for an appointment with a Rheumy but no news as yet.

Take care

[Elaine77c in reply to Hidden]

Hope the Rheumalogy appt does not take too long for you and that it is worth waiting for! The fact that you have seen Prof Hughes is great though - think I would rather see him than anyone. Was contemplating just trying to make an appointment with him but thought I would see what I could get locally first - if they support me having a INR of more than 2.5 and seem to know what they are talking about I guess that will be good enough. I find Drs to be just a bit variable in terms on both knowledge and user-friendliness!!

[Salty]

If you look under "polls" you will find one with your question.

[MaryF Administrator]

Hi there and welcome to you.. yes to what Dave is saying re suggested targets for INR, and I am pleased you have had definitive diagnosis, shame it was not brought sooner, but such is life at times with this tricky condition. Keep us posted with your improvements as it will be useful to hear about. Mary F x

[Elaine77c in reply to MaryF]

Thanks Mary, was more than a little taken aback when stroke consultant said that the system showed they had had similar blood results in 2000 when I was really unwell with what I thought was some sort of post viral syndrome and saw a haematologist. They obviously did not know what the bloodwork was telling them - a pity as it might have saved me from a stroke!

[Hidden]

Hi Elaine,

I have had APS many years before I at last started Warfarin and improved neurologically.

The last 5 years perhaps i did not remember places I had been to and people I had met there.

What is gone before the Warfarin is gone. The damage is done!

But I think you should be at an INR of at least 3. At the beginning with Warfarin (soon 2 years ago) I noticed an implovement at once. After 10 minutes everything got clear and I could read without seeing double! Then after a couple of months I stoped loosing my sight of half my right eye. Vertigo was gone etc.

I wish you luck!

Kerstin

[Hidden]

Hi Elaine again,

About the memory you asked about; memories before Warfarin are gone but I think my memory has improved after the right coagulation. I am still tired and feel a little bit drunk, especially when my INR is under 3. So you can hope for a better memory in the future.

We have a lot of hope. I am 68 so memory can get worse anyhow. But not like before.

Take good care.

Kerstin

[Elaine77c in reply to Hidden]

Thanks Kerstin. I didn't think somehow I would miraculously remember the family outings that everyone tells me I was at but you live in hope!! It is really funny which things stick and which things don't. For me it is people that seem to be the least memorable. I deliberately don't try to talk to new people if I know I won't see them again very much as I won't ever remember them and it is embarrasing when then seem to know you well and you haven't a clue who they are!! It would be nice if that changed!!

[Hidden]

Hi Eleine77c,

You have used Warfarin so short time. They tested me for Alzheimer etc but they think it is the microclots that have caused my bad memory.

As you say I can not recognize places and parties etc I had been to.between 2002 - 2011- The later the worst memory. I think perhaps that my memory this last year has improved, but how much I am not sure.

I recognize people but before I am not sure. Perhaps I have forgotten that too!!

You see how different we are but the groundproblem is a bit the same for us all. Very nice to talk to you and I do hope it will improve, not only your memory but more things also when you have been on warfarin at the right level in the near future.

Take good care.

Kerstin

[tipi]

My husband has been on warfarin since June 2012. side effects terrible, including memory loss...!

He was given warfarin in 2010 due to overdosed chemotherapy causing a DVT in his knee. He was taken off it due to side effects.

He then cought a 'virus' last year and the coughing 'apparently' caused a PE. side effects still bad! Now covered in cysts, has hair loss and mood swings.